I have been quiet. Things have gotten more difficult and my capacity to cope with anything had taken a plunge downhill. I did not think it was even possible anymore but one should never wonder how much worse things can get it seems as the answer always seems to be that they can indeed get worse.
The wisest words about my situation were spoken by a three year old Friday morning, I had agreed to look after him so his mother could attend some kind of course near where I live. Since the plan was for his mother to drop us off at McDonald’s so I would at least eat and he would have access to the play structure or the equally as interesting swivel chairs she popped into the bank on the way before leaving us for a class.
“Do you have a mommy?” he asked. Since he was not distressed I took this for a question and not a pronoun issue. “No,” I said then as that seemed inadequate I amended it to, “ I had a mommy”. He did not veer into issues of why I didn’t have one. I seemed to be confirming something he suspected so he seemed quite satisfied with the answer. “You need a mommy,” he declared with conviction.
That is no doubt the most succinct summary of my situation that there can be. If we define “Mommy” as someone who attends to your basic needs without question, who while she may be exasperated at times by those needs still seeks to fill them without faltering in her devotion that’s also the best treatment plan yet to be devised. The fact is I don’t have that kind of “Mommy”. I never did. It is certainly only that level of someone else looking after the details that would remove enough stress to just get better at this point.. There’s no such figure in sight though.
I do need a Mommy. A three year old being able to see that clearly is about the closest thing in my life to a mommy like level of insight. While his own mother worries about my eating and lack of laundry access enough to do something about it more helpful than telling me to remember to eat, part of the job description of Mommy no doubt includes this sort of cutting to the heart of the matter. He would already be an excellent Mommy if the task were not beyond his fine motor skills, his height, and certain legal issues. Also let’s face it a Mommy who has to be sold on washing their hands and holding your hand when crossing traffic is a bit of an iffy proposition. Still he correctly identified a need and a solution with 4 words. That it’s an unworkable solution doesn’t make it less correct. I have been offered reams of unworkable solutions by much taller and learned people than he is. We all grow out of the clarity of being 3 I suspect. There’s a wisdom afforded to those new to the world where a lack of experience with how the world actually works gives them the least cluttered view I think. I only suspect rather than know that people grow out of that clarity because it seems to take some residual 3ness to accept what is said as wise not baffling. To not dismiss it because it comes from someone who rarely said anything 6 months earlier and still is more prone to ear piercing tantrums than one might hope.
I do, indeed need a Mommy. Perhaps they should spend some of the money they currently spend documenting how my not recovering from my depression is somehow my fault so they can excuse the numerous failures to use the resources that do exist to hire a Mommy for me. I will wash my hands, without prompting in all likelihood but the rest would at least in the immediate future be up to them.
For the past 16 months in the wake of my world essentially falling apart due to a change far larger than my capacity to handle it and subsequent medical and bureaucrat errors compounded with the kind of life that seems stuck on the setting of pour on the bad things I have been treated to far too many people weighing in on what I need. Most have so little clue about autism that they can’t even see how ludicrous their simple solutions are and for some reason I am expected to listen to the same non-solutions get voiced by whoever it is that is dealing with people at the end of their capacity to cope.
One such person just left. I know how they see it. They see me as unwilling to do simple things like remembering to eat. Clearly to her and 100 like here because I have been capable of caring for others this is a choice on my part. I have ensured others are fed, bathed, even continue to breath at the extreme so not being able to meet my own needs has to be choice. I just need to choose to be better and apply sufficient effort. We will have to overlook where I would be if effort were sufficient or any of this was an actual choice. We will have to overlook the judgement that comes as part of these non solutions. Implicit and sometimes quite explicit in these solutions is an accusation of not trying hard enough, not wanting to be well, of exaggerating how bad it is and so on.
It’s hard to hear that you are not trying hard enough when you have tried and tried and any time you were making progress supports were withdrawn abruptly and care plans overturned. Apparently if I only wanted to I could replace all that with reminders from my tablet or a schedule. As if I have not spent my entire life experimenting with variations on that theme and don’t know that I have to already be doing much, much better than I am for that to be even a stop gap solution. Stop gap because even at my best my I don’t get close to desired capabilities in many areas.
I live with contradictions. Wanting to be an effective self-advocate while going to great lengths to try to blend in even when I know full well I cannot even at the best of times. Accepting my autism on an academic level, believing that acceptance and actual inclusion trump faux awareness but being a big barrier to my own inclusion.
The past two weeks were even worse than normal. Last Friday night had me approach “my” seat at the Jewish Community Centre where we hold services to find someone in it. Some weeks it has come up I am coping well enough to handle this. I do after all know it is irrational but for every place I ever sat more than once I have a seat.
I arrived with our congregation president. She’s quite assertive and willing to make a scene which I desperately did not want. I froze on seeing my seat occupied. I was not able to ask if the person could shift one down. I’ve asked before but it wasn’t possible even before I retreated to the wall to contemplate my several all seemingly impossible choices. My friend first tried to convince me to sit where she was going to. I could only shake my head. I knew what would follow would be a fairly loud eviction from my chair by her of the interloper and feared I would have a meltdown that was a bit more obvious than the sort of implosion I was having then that had me rooted in place and incapable of action or speech but at least not in tears. Fear of a scene got me to the kitchen where as luck would have it the president’s partner was doing some task or other. She called out where I was and instantly had the insight I might be hiding but it was too late. My seat was indeed free Further escape to the bus was not even an option. I had been spared only listening to how she put the eviction.
That however much I dreaded this action that this was actually the best solution should be stated not just because I know the person reads my blog because any contemplated other action or reaction would have made things worse. Had I fled or wound up in tears I don’t doubt both that I would have worried my friends more than they already are and in all likelihood had a rabbi on my doorstep instead of an email from him during the week I don’t doubt. This way much of the rest of the evening played out in the usual way.
I returned to the room. I sat down next to the interloper who is actually a perfectly nice man when he is sitting somewhere else… He, I think trying to be helpful and inclusive, said the sort of thing people say when they think the difficult part of change is not understanding that it happens but coping with that it has happened. “Usually we start on page 120 but some weeks it might change.”. He may have even been worried that this week would indeed be one of those weeks rather than seeking to inform me of the obvious. I am not as invested in starting on page 120 as I am as my chair and the blue cup though. It’s almost inevitable that we will in any case.
In the aftermath of my implosion and escape I was still in very concrete mode so all I could do for 30 seconds was wonder why he was explaining the order of service to me 20 months after I started attending, Then I realized he was trying to be helpful but I had already managed to sound a little annoyed I suspect when I had managed to get an, “I know”, out of me,
I didn’t know what to say really, It was thankfully a day where the theme was sombre enough that eviction from the chair he chose first wouldn’t I hoped stay in him mind long. I wouldn’t have been able to articulate why I could know that someone might be in my seat and simultaneously be bothered by it or why on some days I have the capacity to sit elsewhere and cope with the dissonance that arises and sometimes even surplus so I can still get something beyond coping from the evening. Our rabbi who’s rabbinic sense either tingled about me or who more likely was told I was not doing well emailed something about how when the wine glass is already full one drop is enough which again is something I know but did make me feel a bit less guilty.
I so wish that this fact that things can and do change that had eluded me. That it was new and transformative knowledge that having been given it I could work with it If only it were knowing and not the varying capacity to cope that is in the wind. I would have transitioned seamlessly to a new home and not gone through any of the past 16 months. This not so missing piece of information presented in what was probably a sincere attempt to help left me mystified. This was something I know. Oh how I wish it was new and exciting and transformative information that I had just been missing. I love information. Sadly the most interesting part of this piece of information was it being offered up.
A similar approach could be taken with the wine analogy. I know exactly that something very small can be the one more drop that makes my issues less invisible and more visible. I struggle with the competing desires of really accepting my own autism enough not to hesitate in areas where getting my needs met means making a scene and being quite private and wishing I didn’t have needs that were not met without some level of hassle and intrusiveness. The difference being that however tritely, it sums up my reality of a life spent too close to the edge of capacity, it did ease some of the worry about my needs being a hassle, or worse beyond comprehension, I suppose something cannot be in danger of seeming trite without also being very true. Even when it is truth you know too well it can help to hear others frame it. I usually think my self-esteem is actually quite good but truthfully that tends to be in areas not impacted by my autism.
It makes no rational sense at all to be more apologetic about a melt-down over a chair than the bus kneeling when it picks me up but that’s part of the ongoing contradiction I live with. As is trying to encourage actual acceptance and inclusion while having as the biggest barrier to inclusion my own desire not to be difficult. I don’t have the kind of in your face kind of bravado some seem to have where their diversity dang well better be accommodated or there will be heck to pay, I can have it for official, tax payer funded entities for some reason. I expect official support to accommodate me. It doesn’t but that doesn’t lessen my expectation for some reason, It again makes no sense as of everyone in my life the group most likely to put themselves “out” on my behalf are this very group. They have shown it over and over but one can loathe Voldemort speaks for presenting autistic people as a burden and simultaneously seek not to inconvenience anyone. If I was someone else I would probably blog about how annoying I am for that contradiction. Wait I guess that is what I am doing.
As my young sage worked out if I had a Mommy she would do all that heavy lifting for me. I have seen mothers ferociously advocate for their young over much more trivial things, I have similarly advocated for other young charges without a drop of regret for being a bother. Did some one really ask me loudly, “What’s wrong with that child?” when boarding the bus carrying one of my charges. Strap yourself in ladies and gentlemen because the bus ride is about to get a bit bumpy. Did a similarly enlightened citizen really express when passing a friend and myself and the same young charge on the beach how much better it was in the old days when people enjoying their day didn’t have it ruined by looking at children like her? It’s about to get educational. Did her companion while eying my friend who was native really nod at her and mutter something …? You get the picture. It didn’t wind up educational My friend was used enough to racism to find it amusing on some level and pity them for the fools they were and so was expending some effort to keep me on the blanket eatin g my fries and not running down the beach providing commentary about who the real blight on the day was. The offending child had not been seated a bit further up from us and was entirely too absorbed in digging in the sand to need to do any of the explaining of the too frequent kind. So we moved on.
My entire life I can be a lion for other people. I can be that lion even in areas where it matters far less than for racism and able-ism. Heck mess with “my” gamers and anyone who has worked with my knows that my rants will be somewhat endless.
I think as much of my silence post the explosion of followers after my post about awareness came from this contradiction. I was overwhelmed by the sudden unquiet nature of this corner of the internet, my life did take several turns that meant adding the expectation I write on top of everything else I couldn’t deal with was too much but I also felt like a fraud of sorts.
I’ve said my acceptance is always an ongoing thing like pretty much every other thing about my autism it defies quantifying. Compared to when I was 20 and Data was my role model and my goal the same as his – to outgrow my programming I am a model of acceptance. Having realized at some point that Seven of Nine was the healthier role model that was huge growth. For those of you somehow unfamiliar with Star Trek two helpful bits of information. First if you actually know me in real life or at somewhat close to me in the ways people wind up close to each other on the internet it is probably best if you not admit this. You won’t exactly be dead to me but you will enter a category of people I have some doubts about. Second in the interest of understanding what I am saying Data was an android who was perpetually seeking to be human. A high tech Pinocchio who for a time seemed to embody my reality in a way that stirred me.
Seven of Nine was a human who had been assimilated by the Borg. Then rescued by the crew of a later series than Data was on. I won’t trouble those of you without a background in the mythology of Star Trek with why a Borg is a better role model but it boils down to her being quite different from the crew she found herseflf living among despite a certain similarity. She had been human but some elements of being Borg could not change without killing her. Having been Borg since childhood was it seems as pervasive as autism is.
The Borg value knowledge and seek perfection. While their method of getting both is a bit horrifying one can hardly argue with the goal. Seven herself is a logical, very rational, intelligent woman. She sees the humans around her and seeks to be more like them in the ways that she values but retains her sense of some of the things she values highly no doubt as a result of a life as Borg as being desirable and worth holding onto all the same. She grows emotionally but while she has doubts about various aspects of humanness those doubts are expressed in far healthier and realistic ways than saying grabbing an improved emotion circuit. She is able to function as different in a noticeable and to some degree even feared way (her perfection as a role model having grown I suppose as fear of autism has grown) and still be valued by others and herself. She does not approach a situation with the mindset of one who’s difference automatically, even to themselves makes them less.
Some may be angry at being conditioned to approach very key parts of identity this way but conditioned we are and it makes some sense. It is adaptive to some degree to know the ways in which you differ and take them into account the problem really is the internalization of the message the undesirable difference is always on the side of the labeled.
The Doctor was more prone to morbid reflection on his different status than Seven but while she had more life threatening malfunctions of her all important cortical node than he had variations on crashes she is more at peace with her reality. She grows towards that which she values of what she sees and is clear on what she does not view as worth pursuing. She bends over time on a few of those things but overall her sense of self worth is not negatively impacted by being who she is. Unlike myself, who finds myself apologizing for a far more reasonable accommodation for my autism than what her crew goes through to get her spare parts she doesn’t tend to apologize for that much greater hassle. She occasionally expressed some wonder that they would but her basic right to exist and by existing have her needs met without too much quibbling about how inconvenient those needs are is an underlying assumption.
I am not really sure if I will get to that point in my lifetime to be honest. It’s a bit reflexive even in the most accepting crowd to feel embarrassed by the joke I don’t get or the entirely irrational yet absolute need for the comfort of sameness. On the same Friday that my pint sized friend correctly identified my need for a mommy the opinion of the congregation about which tune to use for a prayer was expressed in terms of same of something new. My immediate and strong assertion of same drew some looks but that included one from the person leading who seemed to realize I was so vocal that it should be the same it probably should be. At times when people have really pushed the matter, I have articulated that given the fact that change is a bit inevitable my preference is for them to pick a few things and for Pete’s sake not change pretty much every element of the service, They are a bit self-regulating because the prayers inevitably sound better with the usual form and tune so without my having to push the matter at all a too heavy dose of change tends to be followed by months of barely deviating at all from the usual until people have forgotten the horrors of when they tried this tune or chose this prayer over another. I suppose there is some automatic comfort in knowing you are with a group of people who when faced with the question of why we do some fairly strange things are about as likely to answer with a shrug and “tradition” as a lengthy discussion what various scholars say on he matter. Being a fan of both it’s hard to go entirely wrong.
That at my worst I feel I have to apologize for being me in the setting most likely to accommodate for me is sad for me. I suppose if like the various bearers of support the government dispatches they were actually unwilling to accept me it wouldn’t bother me at all to have had the please don’t make a visible scene kind of reaction to what was a very simple conflict between a need at an extreme because of how badly everything else was falling apart and someone else simply being there first.
In a setting where I am included enough to be obviously to others part of the “in” crowd despite being a noticeable outlier makes this failure very clearly mine. Another contradiction. Absent the rage I can have for the irrationality of entire systems that cannot take into account the existence of a person like myself. Being angry at entities as faceless as governments and health authorities or Voldemort speaks is easy. Seeing the ways in which I am an obstacle to myself considerably harder. Fixing that issue having identified it, as I say a work in progress often undone or mostly undone it seems by whatever else life is serving up.
It’s much harder to say I create additional issues for myself by not accepting my autism on the level that some people in my life are prepared to. I know some of that is a product of how badly I am coping overall. Some however I think is always with me as an echo of years striving to be what I could not. I have for the most part ceased seeking the impossible and even identified the way in which being “normal” might be worse but it I a bit of an infinite acceptance loop. Having overcome trying to overcome my autism I am left trying to overcome apologizing for that which cannot be changed. In better times that would be such a faint echo as to not register much on me mentally but at a time when a child can identify that I need a Mommy that urge to not be a bother, to not have people need to alter anything for me is manifestation of non-acceptance. While countless articles will blame this reflexive devaluing of myself on the society that creates and nourishes it there is only some truth to that. It is true messages about your non-normative reality get internalized. How could they not when the entire format of you life has you as a case in need of management rather than a person? When at an extreme by being able to articulate some of your struggle you are seen as a danger to those who are “really” autistic simply by doing so. People might believe your life isn’t 100 percent tragic if you describe it. People might see that even at the grimmest of times your life is a life and has value and meaning not just to yourself (which should after all be enough) but to others. Still a life lived having to state those very things is taxing. Your default position shouldn’t be having to justify you life as possessing value despite the dificulties. It’s tiring.
If I could lay all my own lack of acceptance solidly at anyone’s feet I would be off the emotional hook but it would not be honest. I don’t know if I will live long enough to be in a state where I don’t feel apologetic for my less cleat cut needs. Lacking a Mommy it is my responsibility to articulate what they are. One would hope that when presented with a situation where I can’t do that and someone else is both willing and able to champion my needs I could just accept that without embarrassment and without apology. I can’t though. Not right now at this time in my life when so little is certain about the shape of each day or my ability to endure it.
It is always the small things that we fail to account for that wind up becoming big at a time like this. The bursting into tears on the bus when one cannot conceive of either going on or ceasing to go on. Well okay that seems like kind of a big thing but the crying on the bus itself is small in the grand scheme of things. The trivial change not coped with being harder to predict than the huge one that most would by now say I would do well to avoid. I need a Mommy and while some might say I have a small army of such things standing by of both genders standing by to secure things like my chair, demanding that I eat, and so on that is somehow not quite as comforting as the child’s version of a Mommy entity that can deal with everything for you and about you withought their devotion to your needs faltering. The presence of so many people in my life tackling those practicalities from time to time should make me more certain it is okay to be as I am.
The kind of conviction I have when I place it in a spiritual perspective that it has to be that I am as I intended and by extension then my life has value equal to other creatures is sometimes starkly lacking in my day to day life lately. I suppose the real advantage of the love of a Mommy like entity over that of G-d is like the kneeling bus it’s concreteness. When you are young enough to be constantly with your Mommy or people Mommy enough like to be an acceptable short term stand in for her you always have that care and concern, and love and acceptance of the miracle you are being reflected back. When I am feeling only slightly better than I am now I can quite easily access the less tangible form of love and acceptance and renew myself on that but right now even that is a task beyond me. So I do in fact need a Mommy.