An Autism Journey to Independence
Hopefully by now you have realized that we are very proud of our children. Much of our effort as parents involves helping to boost their self-confidence and support them as they pursue their version of life’s happiness. Many days it seems that we are their biggest fans while they are their own worst critics. It can be a tough balance to drive our children forward to achieve the most out of life while also helping foster a lifelong confidence in who they are.
In the aftermath of the tornado, I was reminded of the old adage, “if a tree falls in the forest and there is no one around to hear it, does it make a sound?”. For us, it was more like “if bills don’t ever get delivered, and there is no mailbox to receive them, are they still due?” The answer sadly is yes.
While under one roof, we had worked unsuccessfully to get the kids to respond urgently to fire alarms and take action. It did not help that it seemed like just opening our oven could set the whole house alarm system screaming “Fire” like an episode of Beavis and Butthead. Still, we knew that responding appropriately to fires and other dangerous situations was absolutely necessary for the kids as they sought living independently.
When we decided to take this journey with the kids, we knew that there were many skills to be taught and tested to enable Dylan and Jolee to be independent. As discussed in our prior blog, We Can’t Do This Alone…Getting Help, we enlisted Nurolux to help determine where some of the strongest needs existed. For us, safety ranked at the top of our list for the kids. We could provide food, clothing, housing, and money if needed. Cleanliness is important but not life threatening. The one aspect we could not control was safety when we are not around.
by Jolee Roth
Hi everyone. I just wanted to explain who the characters in the 12 Days of Christmas are. Taur, Prince, and Blackfire are siblings. Their parents are Shadow and King Flamzer. Taur is the leader of the Super Six Team that protects the Cartoon World from the Evil Toons. This is the story about Taur’s holiday with his family. I hope you enjoy.
Meet Taur. Taur is a winged cat-taur. Taur is the fierce leader of the Super Six team who battle the Evil Toons. Taur is the brother to Blackfire and Prince and son to Shadow and King Flamzer.
Before we get into the kids’ first nights living alone, how about a little apartment humor from the comic legend Steven Wright…
“I installed a skylight in my apartment… the people who live above me are furious.”
“My roommate got a pet elephant. Then it got lost. It’s in the apartment somewhere.”
(Side note – getting the kids a 1st floor apartment was important given that Jolee is well known for her “elephanting” or loud footsteps. You can always hear her coming).
Dylan and I went to pick up the keys to their new apartment, right at noon on their scheduled move in day. As I felt my own excitement rise, I could almost feel the anxiety building in my son. Our first step together would be a thorough walk through, a checklist to document the condition of everything that comes with renting an apartment. As part of his responsibility, we decided it was a good idea that Dylan should actually document and sign off on the apartment move in condition. In addition to giving him responsibility of the apartment, it was also a great opportunity to show him how everything worked along the way. We spent a solid hour opening and closing each and every window, drawer, and cabinet door. We adjusted the thermostat, turn on every light, and tested the dish washer, oven, washer and dryer. Dylan took pictures with his iPhone and together we penned simple notes about each of the small issues that we uncovered. To complete the effort, we dropped off the paper document and emailed in the supplemental jpgs to the main office.
Meet Blackfire. This gorgeous character is the sister to two of Jolee’s favorite characters, Taur and Prince. She is the middle child of King Flamzer and Shadow. She is known for being very timid and sweet.
I liken our moving from our house to buying my first car after college. My existing car was suddenly having issues and a lot of sales were happening right then. My mind was in turmoil. I knew I needed transportation, but there were so many choices and I didn’t know my future needs. Would I need four wheel drive for snow or tinted windows for extreme sun? Should I get a small sports car or an SUV for moving kids and home improvement items? With college graduation approaching, I just didn’t know what was best. So I did what any confused person would do. I went to numerous car dealerships and looked at EVERY kind of car they had until one stood alone as the best option for me at that time.
This lovely character is Harmony. Jolee created this image for the cover of her comic Harmony’s Ambush. In that story, Harmony is ambushed by the Evil Toons while just flying in the sky. Harmony is rescued from the Evil Toons and shown caring and support by his friends, Taur and Prince.
It was not easy to coordinate the move out of one large house and into 2 smaller apartments with two different move-in dates. Luckily, it was Bobbie and my apartment that was ready first which allowed all four of us to settle into the larger unit. To help survive this near-term chaotic living situation, Bobbie took both kids on road trip to Florida to stay with her sister. We have made this trip several times over the years, but in this case I stayed behind. This allowed me to handle the initial unpacking, WIFI set up, and continue working at my Finance position in effort to stay employed.
It is a little-known fact that when I am left alone, my mind tends to work overtime to solve many of life’s problems, real and imagined. This time it gave me a chance to think through the year ahead and what success for our family would look like. In a rare moment of genius, I decided to document my top 11 predictions for the coming year.
I love the quote “Failing to prepare is preparing to fail” by John Wooden, legendary basketball coach of the UCLA Bruins. If we wanted to succeed, we knew we needed to prepare for what was ahead, moving two young Autistic adults into their own place. We had a basic idea of what we had to do, but it was certainly not a well baked plan from the onset.
As part of this blog, we will mention several people and organizations who have helped us as we orchestrate the year ahead. Please understand, we are trying to give credit where it is due. When we mention anyone, it only because they added value for us and by extension might be worth considering if you have similar questions or needs. We were not asked, nor do we serve to gain anything by way of referral or mentioning anything here. With that as a caveat, on with the story.
Thankfully, a new friend recommended that I reach out to Dr. Jessica Taverniti as a resource to discuss our children and their transition to independence. We connected with Jessica (she asked us to call her by her first name) and were intrigued by the conversation. Through the initial “getting to know you via Zoom call”, we learned that she was the founder and CEO of NuroLux, an Autism support start-up in California. It was really the company vision and the Jessica’s passion that made us want to partner with this company which had not even launched yet.
This is not your typical coming of age story and it is certainly not a sensationalized story like Britney Spears’ emancipation. What you will read here is a decision, plain and simple. Although the road we were on as a family was relatively straight and tested, we decided to put a fork right in the middle of it! After living under one roof for the entirety of our children’s lives to date, we were determined to validate whether they were ready, willing, and capable to live on their own.
We are here with you because we wanted to catalog our journey this year, gathering our potentially brilliant ideas, key learnings, and missteps to memorialize how far we have come or may still have to go. If even one person finds value from our effort, it will be well worth it.
So how can you test independence?