But what if those things weren't possible? What if no matter how hard you wanted or tried you just could see those things, remember what to do next on simple tasks or start folding? What if going step by step still wasn't small enough for you and you didn't understand? You would feel confused, isolated, stupid and alone. You know something's wrong but it just looks like forgetfulness or laziness to others and they just list off really wise advise to help you on your way.
When well intended, but un-knowledgable, people try to advise my daily struggles with order, time management and cleaning I often get similar advise. I hear a lot of, "take it slow", "one step at a time," "de-clutter your house you probably have too much stuff," or "lower your expectations or "make a checklist and move down the list." I'm not being cynical about these words. Many of these words are truly good advise that I check myself with regularly and I really do love the heart behind the advise. But the advise is based on the understanding that I process and recall information the same way they do. Frankly I don't and can't.
I have a brain disorder that limits my ability to order my thoughts, time, and yes even objects. This means basic things like laundry, dishes and juggling children's multiple needs is kind of like doing three 1000 piece jigsaw puzzles with no picture. It just makes me cry. It can be hard to understand but it's something I was born with and at times it's worse then others.
Officially I have been diagnosed with a "Non Specific Disorder." Basically saying I have almost all the symptoms of a disorder but not enough to scientifically say definitively yes. But they recognize that there is a problem, this is it so they treat it as if I have the full disorder. So I have, in essence, what psychologists call Executive Function Disorder.
It is a neurological problem found in a specific area of the brain, don't know yet where, but mine was damaged at my birth due to lack of oxygen. The EF area of the brain is kind of like a traffic cop that tells the brain what to do with incoming information and where/how to store it. Then on the flip side it's also like a librarian that tells where to retrieve that information so it can be used. These neurons in this small section my brain are dead so my brain, in essence, has no traffic cop or librarian.
When I learn new stuff, like we do everyday, I am unable to organize it. It must come to me already in an organized way. And to complicate things even more the way it is organized needs to be in small groups or clusters so I can process and memorize the information. When retrieving information I use systems and patterns set up (memorized) or I don't know where to start, stop, tweak or how to adapt to unexpected changes. I have learned over the years how to jump from one system to another so I don't get stuck but some days I just can't figure out what the next step is so I kind of just sit there confused, sad and a little afraid. Think of being lost in the woods with no compass or sense of direction.
At times like those I wish my problem was a simple solution of step-by-step but the problem is that when things get confusing I can't do anything without outside help and I mean nothing.
I do chuckle a bit at the advise of using checklists only because they are a staple of my existence. I have so many checklists but they are categorized, chunked in small groups. I have a checklist for what to do today, grocery list- this breaks into my Costco, Fred Meyer, New Seasons list; then I have a flow chart that tells me the order to do my errands. If I need to go to Costco or NS I can see what order to run my errands in and about how long each step might take so I know if I will have time or not. Then I have check lists for my cleaning, menu planning, bill/budget, each meal I make and how long to cook each thing, and my kids' reading/learning skills they are each working on and so on. I'll be posting and sharing more of these systems as we go incase so,e,of you are wondering. If there is something particular you want to know how I systematically go about it please leave a comment below and I will post on that.
Each of these lists are what I call systems and each system runs with and into the other. It is truly the ONLY way I get through a day. My elephant roadblock comes when I come across something NOT on my list or when the plan has changed beyond what I know or have an alternative plan for. So, for example, the car won't start and I need to go do steps A-G but now I can't. I'm stuck. I don't know what to do next if I can't do A. AND I have something new that wasn't in steps A-G, the car needs fixed, so how do I work all those together, prioritize and know how if I have time before important things like kids wanting meals happens. There are a lot of variables and each one has a number of options and outcomes. If I sit down and start all over I can refigure every step and possible outcome, I means EVERY SINGLE ONE, but that can take so much time. Thank the Lord I have some great friends in my life that have helped me create my lists but they are not always available for unexpected happenings nor do I want to constantly call on them. I have though brainstormed with them about these unexpected to create new systems of "what ifs" so that I can draw on something should a similar thing happen again.
I also have processing speed problems and phonological problems. I'll get into those at a later time but simply let's say they basically mean I take in and process information slowly- duh and I don't connect sound to objects making learning language and reading difficult.
It's all this to say that these disorders and disabilities can be challenging at times but I live with them everyday so though most of the time I don't give them much thought this still effects my daily life. It effects how I parent, organize my house, my time, my kids schedules, even my husband's schedule. It effects how my friends interact with me...or I interact with them. It effects how I take on various volunteer work in the community and in ministry. I don't process fast so when people talk to me it might take me a bit to intake everything they said missing parts of group conversations. I don't observe seemingly obvious things so unless pointed out I don't notice the awkward looks of a belayed comment making me feel socially out of place.
Having disabilities can be frustrating, more often then not but it's not who I am. It's a part of me but does not define me. It's something that I must overcome and when I climbed that small hill and overtook that obstacle I can take those lessons and move on with my journey. Because this IS a journey and I get to share the ups and downs with you. I get to share how I figure out the daily grind of being a wife, mother, friend, musician, ministry leader, student, hobbyist, and so much more. I hope you find this encouraging. I hope you are inspired. I pray you find hope because that makes this road worth trekking.
-Jilena