A diagnosis of FASD later in life gave R.J. Formanek a wide base of strategies when it came to thinking about FASD and those who live with it. He's a motivational speaker who tries to help others understand the complex world of FASD, and is the founder of the Facebook FASD online support group 'Flying with Broken Wings'.
Living on the FASD spectrum is much like the difference between a standard and an automatic transmission in vehicles. They both do basically the same thing, but each has to be considered, understood and operated differently. You will never get cruise control with a standard transmission.
However, my standard transmission brain does enable me to do some things that often lead others to expect more of me than I am actually capable of. We call that the 'presumption of competence' and when people expect or even assume that we are all driving with automatic transmissions and those differences show up they can be rather extreme! Expectations are not fulfilled, and that confuses the entire situation again.
Learning how one's own brain actually functions, seeing where there are problems and where there are strengths is the first step for us.
I rely on my own personal support team to help me do the things that I either can't do, or that cause me so much stress to do it's not worth it. One person cannot really fill this role, it's not fair to that person... but having a number of people who can 'help out' in certain areas can really be a huge step forward, and helps me be a better version of myself. Our brains really are structured differently, and they operate differently. There is no getting around that, and try as we might we can’t always fulfil those expectations when placed upon us.
Learning how one's own brain actually functions, seeing where there are problems and where there are strengths is the first step for us. We then need to try and 'explain' to people close to us how to best work with our brains... because as owner-operators we can tell people what works, and what does not. But we need to be cognisant and proactive ourselves to reach out to the rest of the neurotypical population. That's not always easy, but we are all in this together, right?
Organising your team
It's really helpful to have a team around you who can help with the 'pain points' - things you know you may struggle with. I have a good friend who is my 'shopping buddy’ – she gets me where I need to go (as I find public transit very stressful) and she can also help me find the things I may need. Closer to home, my roommate (who is my son, lol) is officially in charge of bills... I pay him and he ensures that things are paid on time, as I struggle with memory issues and this takes a great deal of stress off me.
I talked to a travel agent, and explained what I do, how I do it and my own challenges with memory and emotional regulation and she too has joined my team, which really helps with setting up travel to do presentations. She knows my needs and my preferences and walks me through, step by step what would in the end work out best for me travel wise.
These are some of the people on my team who play a huge part in my life, and make me appear perhaps more successful that I actually would be under other circumstances. This is not the entire list, but these few illustrate how a few simple changes here and there can make a huge difference. I don't have to do it all alone, and that gives me the chance to do what I am good at, as opposed to burning off all that energy just to get to the point where I am too exhausted to do it right. Interdependence is not a bad thing, and it also has to be a two-way street, so I am able to offer my skills and abilities to people as well."
(Reproduced with permission)