CAREER vs AUTISM RECOVERY
My daughter recently turned 18 and while this is wonderful that she made it here, given I was often afraid she wouldn't survive til adulthood between her debilitating inflammatory bowel disease (IBD) and self-endangering behaviors her autism caused, such as her often running in the street as a child to see my reaction, climbing onto and walking on our windowsills and elevated deck railing, and trying to cover her head with covers despite multiple attempts I made to help her not suffocate, it's still bittersweet. I had hoped she'd be further along in her autism recovery and feel torn between completing my autism recovery by creating a career for myself that I didn't do when younger, which is time consuming and must take place away from her, since she loves to interact continuously with me when I'm around her and I can't get anything done. It's obvious that she changes and learns a lot when around me but it's a lot of work as I'm innovating and leading her into learning each time, and it's a lot of work, and comes directly out of my own recovery time. I've decided to train people more lately so I have to leave time for that so her time with them is of any value, but that also comes out of my recovery time. Then I feel guilty because I see her isming with these other trainees a whole lot, whereas with me she's at her peak performance and ready to learn and work hard, but it sure takes a while for people to get anything close to my level. I've been meaning to put my training online to reduce my own training time and allow others to use the videos and that time approaches, but isn't here yet because you guessed it - it takes time away from her reading my book on Premiere Pro - the video editing software I'm learning that would enable me to create the videos. It's a balancing act and feels like pulling yourself up by your bootstraps.
So here I am with the school year starting and I need to spend many hours with Anna because our summer student employee went back to school, leaving multiple openings (contact us if you're in the Milwaukee, WI area and want to participate!) which I had not filled because - you guessed it - a lot of work goes into rewriting and posting ads in craigslist, the college job boards, care.com, interviewing people, selecting and training people, which I put off because it comes again, at the expense of time to get my career going, But here I am with noone scheduled til 3:30 and she woke up at 8:30 ish with her ankle so sore she can hardly stand and we're going to have a 7 hour session prior to their arrival. This is fantastic for her - she WILL improve and I WILL invent - and already am - the next approach to help her (by the way, progress just happened moments ago - she started doing something I talked about on the Turing Test for autism post a few weeks or months ago! Very encouraging!). I will be redoing her son-rise playroom schedule to adapt to the person leaving, realigning session start and stop times to maximize her sessions with support staff happening during her brother's college classes so I am not trapped here whenever he leaves unless they're out, and doing those college posts at Marquette, UWM (UW Milwaukee), care.com, and craigslist.
The hard thing is I know I can completely cure her if I only did that and did nothing for my own life, needs and recovery, but that is just unacceptable to me as a human being, so I have to straddle the twin discomforts over dragging out recovery time (it's like she only moves developmentally when I work with her) and my discomfort at not having a life at all if I tried to eliminate the other discomfort. It's balancing discomforts, like in The Simpsons show, how Homer Simpson put his pet lobster (needs saltwater) in a fish tank with his goldfish (needs "fresh" water - not salt), and the lobster rotated upside down and rose to the top of the tank, indicating it was going to do, so Homer added salt, and it came back to the floor of the talk, rightside up, but the fish rotated upside down and floated to the top of the tank at the same time, so he kept adjusting by adding more salt, then more water alternately until they were both halfway up in the tank and on their side, like noone's doing well but noone's totally screwed. My tradeoffs feel like that - two not-wins in the short term hoping two wins will happen down the road if we can both keep moving and invent new solutions as we go, not to mention my career gets going.
"AUTISTIC LYING" - LEARNING / SPEAKING THE TRUTH DOES MATTER
What I'm inventing today is the concept of "autistic lying", which is not like ordinary lying where a person knows something and answers a question or otherwise speaks in a way they know is counter to reality. Autistic lying is more the result of a combination of:
- the desire to interact and people pleasing by speaking, believing it's not that important that the content be real or relevant +
- autistic person's brain's lack of ability to form new concepts and language, as evidenced by limited, patterned and repetitive speaking habits (esp familiar phrases as filler) +
- autistic person's not realizing the primary role of speech is to convey useful information (entertaining, informative, useful) and/or questions are to ask about what you don't already know but would be useful to know +
- lack of practice attending to the laying down of retrievable short term memory, meaning it's not been so when you ask about what just happened, or even what happened the day before, they aren't used to putting in memories and finding it important - ie if they don't there will be consequences they want to avoid or benefits they'll get - to store and draw on them +
- not have experienced consequences tied to confidently saying things that aren't true as a consequence of all the above factors
I remembered I was working intensively on time during the last week and was asking my daughter about today, vs. the day before, where I asked where we were the day before (we spent most of the day driving home from Cleveland) and she didn't remember at all. Even when she could remember we were visiting Cleveland, then I asked where we were now, and she knew we were home, it's like the hours of packing plus 8 hours in a car totally left her brain, almost like amnesia, but I disagree - I think it was in there if I had prompted, it just wasn't retrievable TO HER absent my reminding her, that's the problem to be rectified. Similarly, my daughter will often say something that's totally untrue but I've glossed over it or not responded, because she meant well and wanted to fit in and be socially agreeable, such as when I say "Hey, look at this big helicopter" and she says "I see it" before she gets close enough to the window to see it or has her eyes in the right direction. She will often fill in possible answers but that aren't true, and I think, "Well, at least she's answering me, getting an acceptable answer if it were correct, and trying to get along". But it's time to go to the next level! Our nonjudgmental approach in the son-rise playroom needs to shift once the child is communicating this way and/ or starting math, both of which the concept of correct and incorrect matter. She needs to learn the belief, rather than talking however you do it great and all you need to do it fill the conversation with words (even if they're not accurate and are repetitive). When she asks me the same questions and I answer them, or she says the same comments or stories, her brain registers 'success' interacting and stops learning/ changing - after all, her goal is to go along to get along, and what she's doing seems to work with her mom, who seems happy to hear untruths and old recycled material. I don't know how other son-rise parents got over this, but here's my attempt:
I want to now instead teach:
- Distinctions between lying and telling the truth MATTER to people: it matters to people and people value you to store and retrieve accurately recent and current information, and call the other stuff as it is: "lying". Lying is mentioned in her cartoons a bunch and she's never connected her inaccurate answers and this usually negative and intentional behavior, which I am doing not. Lying will NOT be an appreciated or useful way to interact with people, it will get them bored, confused, upset, and may make them stop interacting which is NOT good for her, esp. since she is not doing it intentionally but it may be interpreted that way by others, since they don't know it's autistic lying, they see it as regular lying or the person has memory problems or dimentia. Note that I'm not judging her
- The normal use of speech is based on new stuff almost exclusively - NOT to repeat things we and others already know: much if not most useful speech if made up of these recently stored and remembered data to be useful to onesself and others. Anat Baniel I says most of the brain's directions to our muscles is inhibition, and I'm trying to get her brain to inhibit repeated older info / memories / communications as a way to clear the deck for new ones
- Help her practice storage and retrieval of current information with stakes she cares about, such as mentioned in the Turing Test for autism article - practice writing an recalling happened earlier that day or recently by asking her to recall, not by telling her.
- Having her sense and ask for help when she needs help with needing and learning new language to express herself accurately as well as discovering, embracing, taking charge overcoming her current short-term memory deficit through practice - a big stop toward being her own teacher and embracing self studentship as an adult. (See a prior post on my theory that autism includes a serious short term memory deficit that leads to problems introducing, storing and retrieving novel data from the brain.) This
I'm teaching this by:
- Self-awareness by noticing when statements/questions are new vs. she already knows the answer: I'm helping my daughter distinguish (making distinctions is how the brain learns, from my perspective as an Anat Baniel Method practitioner) between questions and comments she already knows the answer to - ie we've already had that conversation, vs things that are new, such as how she's feeling right now, and naming it "old stuff" vs. "new and useful" and stopping the conversation and pointing out "old stuff" when it occurs, and asking for something else she wants to understand or I don't already know. I just say, "We already talked about that" or "Didn't we already talk about that?" then she remembers and agrees based on my intuition of how people look when they do vs. don't for sure know. I say, "What did I say?" Then she says what she or I already said, confirming my intuition that she did actually remember (I don't want her to be asked to remember something she doesn't, but each time she DOES actually remember the familiar question, statement, etc. Then I say, "Say something else about that" or "notice something" or other comment types I listed in my Autism Turing Test conversation teaching list, and we go from there.
- Short-term & Long-term memory boosting: I'm preparing memory exercises such as famous quotes, the golden rule, family middle names she never learned remembered, colors of the rainbow, etc. To see if she can learn something useful every day with WAY more repetition than is normally given in school, where all day we repeat and practice it. I will Additionally
- Using consequences (losing your iphone for a period) for changing conversational patterns to reflect more common conversations by encouraging new and accurate (ie not an autism lie) information, no matter how trivial: Until she's had enough Anat Baniel Method lessons and/or Son-Rise facilitation from my, I'm doubling down on my Turing Test for Autism list of how to make typical conversation to practice to create new conversational patterns of new stuff even if it's the most trivial thing in the world. I plan to ask her what she just did, what she had from breakfast, what she's feeling or thinking in the moment, whether she pooped or urinated in the bathroom when she came out - it's all present or at least new and will form a new habit to disrupt our existing one that seems stuck. I announced consequences (having her lose her iphone 15-30 min) as a consequence of being untruthful. This will motivate her to ask for help to participate in the conversations she really wants to and start the engine or her self-observation and asking for instruction when she can't say what she wants, rather than resorting to phrases she already knows. Additionally I never take away her iphone without providing an activity that's useful and in most cases ends up being even more high quality time to make use of her motivated and focused mind, that wants the iphone back. The Son-Rise Program teachers teach us NOT to give kids electronics at all for a variety of reasons but I do this for reasons of novelty for her and also to help her do something safe, so I know it's all to her benefit either way.
- Reminding her about the normalcy of mistakes so she really really gets when not to attack people for them - most of this morning's rancor started when she was lashing out about putting an ice pack on the swollen top of her foot, the result of hitting it by accident when he was jumping up and down the night before (see story below).
THE EXAMPLE EVENT THAT TRIGGERED MUCH OF TODAY'S LEARNING
For example, last night Anna said she was jumping up and down and hit the top of her left her foot against a chair leg and/or a wooden laptop lap desk that were against each other, and it was swollen last night but she could still walk on it to shower and get ready for bed. This morning, however, she was unable to put weight on it to get up and use the bathroom so I had to go downstairs and get crutches, and later got her a cold pack from the fridge to soothe it. She was acting frustrated / angry with me and lashing out at me when it was obvious I was trying to help and she was upset that she hurt herself and was taking it out on me. When I put the cold pack against her foot, needing to mold it slightly to wrap the strap to hold it on, it pushed on the swollen bulge on the outer top side of her left foot, and she yelled and lashed out and started calling me "Bad mom" several times. I told her I made a mistake and how the cold pack is less pliant when just out of the freezer than it is later, so it's understandable I might push it too hard, overestimating the initial flex to bend it to her foot. This continued for a while, her berating me and me trying to explain how I was the one helping and she's probably taking it out on me - the upset of the hurting foot. Maybe an hour later after I had gotten a cold pack set up on the foot, elevated her feet, she was sitting in a comfortable reclining chair, after I had helped her dress, adjust crutches, get her deodorant and shirt and all on while still on the toilet because she couldn't get up before I got the crutches, I asked her something about the morning and the ankle I can't remember just now but it will come back to me in a few hours and I'll add it here - I took her iphone because I wanted her to work on learning something at that moment that was important - I can't remember because what followed it was more significant. In an effort to move away from unhappiness like anger or yelling at their request, I had told both my kids that if I was upset next time I would just take their iphone away for a period (briefly - while making use of that time as teaching time, in most cases, not abandonment). She screamed when I tried to take it which was unnerving and would have sounded bad to anyone who might be hearing it, so it raises the danger that neighbors might call the police or something - this is something parents of autistic kids live in their whole lives - when she was a little kid she used to scream like someone was trying to kill her over tiny things like her dropping her toy from the shopping cart. It was back again - the old fear, because these autistic people don't understand the trouble that's possible when acting like that could confuse and mislead people as to the gravity of what was going on. I was planning to take it away for maybe 10-15 min just to have her focus on and learn something she was missing, with me, said I was going to take the phone away and because of the screaming I took it away for a half hour, because I've tried to teach her this lesson in the past and it obviously wasn't learned. Then I asked her why I took the phone away, just minutes after taking it away for her screaming and saying it super clearly including why this would endanger her too if police were called due to the screaming, and she said it was because I pushed on her ankle, which I hadn't touched. I kept saying "wrong", what did I just to? what did I just say? She kept getting it wrong but rather than saying she didn't remember or needed help to express what she knew was the answer, she kept saying what she was saying this morning about being upset about my pushing on her foot, totally irrelevant and in the past. I finally reenacted the walking toward her and asked, what happened when I did this? and she said how she was screaming and totally knew and remembered, just didn't remember that it mattered to tell the right story not just say something in response. Then I asked her why she lost her iphone - 2 reasons both clearly delineated prior to asking - (1) shrieking / screaming at the top of her lungs when nothing serious was happening, and that could get us all in trouble and (2) "lying" about it - saying I took the phone away for something unrelated that didn't happen at that time. She kept answering that she was losing her phone because I pushed on her foot and she got mad at me. When she finally acknowledged from the reenaction (which really helped) those were the answer, I asked her why she didn't answer that way to start with and she said she didn't know how to say it. This triggered my awareness that she knew it was wrong and just didn't know how to say the correct answer, so I made the point of pointing out she could ask and practicing ways she could have asked for help saying what she wanted to and how important it was to me and others NOT to say things you know are NOT TRUE, and how this is called lying when you know it's not true, whether or not you intend badly by it.
Along the way there was the concept of a mistake, that I didn't know that the pressure I applied to the cold pack to get it to "wrap around" her ankle would hurt that much and how not to lash out at those trying to help and those who make well-meaning mistakes.
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