by Brian
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.
Through a series of conversations two months prior to the move, our plan began to come into focus. The best part of the process was that it felt more like we were talking to a good friend. Jessica seemed just as excited and anxious as we were, like we were learning on this journey together.
One of the key tools in the NuroLux toolkit is a series of questionnaires. As former engineers, Bobbie and I still get excited by data and thus loved the idea. First up was a family introductory questionnaire which centered around our experiences to date, confidence in navigating resources, and our overall philosophies on raising our special needs children. It was relatively painless and certainly helpful in identifying our current state and what was working from our perspective. This process actually provided us a sense of accomplishment on how far our family has come and inspiration for the path ahead.
During the next step, we as parents completed the same survey around “adult life skills” as Dylan and Jolee. Each question asked if a given skill was independent, support needed (full or moderate), development need, or N/A. Key skills ranged from personal hygiene to grocery shopping to relationships/dating to decision making to safety. There were sections for digital competencies, recreational interests, finances, legal, medical/health, employment, transportation, and other support. Independently (pun intended), Bobbie and I answered the survey and then each kid answered the questionnaire from their perspective. You can imagine this was not easy as we needed to explain what many of the questions meant without unintentionally influencing their answers.
Bar none, the real value from the survey was in the disconnect of our responses compared to our children. We found one response around safety particularly funny. The question asked us whether Dylan and Jolee had the skills and awareness to walk safely outside at night. As parents we marked this as a target need for development while our children marked it as N/A. Without hesitation, they told us that this skill was clearly not applicable because they “do not ever walk outside at night”. By their missing the point of the question, we actually were able to highlight the point as a gap in knowledge and opportunity for growth. The surveys and, more importantly, the lack of alignment in our answers compared to our kids was eye opening. It was like a flashing light indicating “over here you have a lot of work to do”.
Below are some key topics we have discovered and explored for development together:
- Safety – registering with Smart 911, purchasing medical alert bracelets, following procedures around keeping doors locked, appliances off, shades closed (and learn to walk safely after dark).
- Money – buying things (starting with reloadable cards or limited cash before moving to credit cards), paying rent and utilities, shopping online or in store for groceries.
- Schedule – creating individual white board schedules that outline expectations by hour and by day, planning downtime compared to productive work, taking time for cleaning apartment, working out, and self-care.
- Health – how to manage weekly medicines, creating first aid kit, carrying and using insurance cards.
* Note, as parents we are still learning about insurance coverage rules for part time students and navigating Medicaid options and the IL Social Security Disability Insurance Program (SSDI) waiting list.
We are still meeting with Jessica monthly to review progress as well as the ups and downs that we all knew would be part of this journey. We understand that this type of support may not be what everyone needs, but it has worked well for us. Consider this like a positive Yelp review, and just maybe worth checking out at www.nurolux.com.