Invisible Lives

Pardon the poetry but some months are so awful nothing else will work. It has been decades since one would mistake me for a poet but the most raw subjects will not be formed into sentences with ease.


Invisible people leading terrified lives
Unheard as well as the words we summon are taken as other
When words will not come dismissed as having issues
When they come slowly they are again issues.
It is a terrifying thing to walk among those judged as people
To depend upon them and know that you are in fact a hostage
They can and have hurt you.
They will again

A word sends you flying blinded by all but the desire to get away
Words you were taught do not hurt. They do.
You do not have to fall down a case of stairs because of this blind panic
The panic that comes from being seen as less worthy of anything useful
The fleeing to most confirms that.
If you could speak easily you would spit out the relevant research
No one actually cares that if a word you have heard often sends you so fast
You are in fact already hurting more of the time than not
Dismissed again with less than a proper exam as you are not worthy
Not of the care those unlike you get
Not of concern that your constantly over—aroused state needs looking into it

It is, after all for those who understand brains a sign that calm has too long eluded you
Brains are your area but they who can sneer the words of dehumanizing would not think this
You will be dropped off
Without proper care, lie in pain and terrified
Wonder what it would be to be an actual person
Perhaps just as bad you think as that seems a process of trading truth for something else

Those that do it control your care though
You want someone to know but have never been able to call strangers
Your request is refused, you point out the dubious legality of this
They decamp to the truck to follow the edict that nothing you want done will be.
A hostage of disability or the smug feeling that you are others too control and spin.
Wrong has been done but if they can get the their version out first …

No one comes of course.
This feels like re-run
To make it worse levels of how little you count have kicked in
Fired by your pharmacy you try to create enough of a balance of things so that this is not fatal
Invisible lives so unworthy that the potential for death a fairly clear ethical line
Need not apply to you

Devalued lives, unvoiced fears, where is my voice?
Tears are shed into the dog.
Accustomed to licking them from the face he performs the service again.
Choke out a few words for him on how sorry I am that he is stuck with me
He could have a happy human.
One viewed as a full person with the rights of others
Then again they might consider him their owner and likely have others to help when tears flow
The sensation of panic will not go away on its own and looking at the medication left
The worried math of evoked potentials
The work that should have been done by he who felt he could indeed deny something vital over profits.
I have for years sent back the form he demands I fill out.
So sudden action seems cruel as I am used to kindness in a pharmacist
In the former owner as well
Red faces and stabbing the air he has spit out he is both
The new owner and a pharmacist this enraged bully confronting me at the door
Of what passes for my home.
The stress and fear apparently not his concern other than in theory they are
That I may not be able to cope with any of the ways too work around this firing
should probably concern him but why would they?
Many professionals have ethics but they apply not to the likes of one such as me
The death sentences fly in

Society trends in a direction so horrific that this is one of many similar incidents
The worried math of how to prevent death is my concern
Another gash in any facade that I am a person
The progress through which you become a non-person is ongoing
You sometimes forget.
Sometimes in the brief joy of being among people who see you as you
You are lulled into thinking this is a view that might catch on
In the days that follow you will reflect on how often you have made this mistake
Chiding yourself for blaming yourself for the natural desire to lean into a better identity
To believe others may not be blind whatever caused the quick dismissal
You are wrong though.

Asking for a phone call to be made you are refused
Autism is something you feel like blaming for this form of hostage keeping
That would hardly be fair though
As society has in theory provided support based on what you cannot do
Then never really monitored if they comply
So now they too are terrifying as one cannot be supported by those who will cage you
Who are alarmed that the agency who has every right to know and thus they will not.

Invisible, unheard, damaged and scared
Not by the neurology that allows so many to discard you
By the many who have to view you as less than to get on with …
I have no real clue what drives this desire that some must be so much less than
It is common but it’s utility is lost on me

Invisible, unheard, hurt and terrified.
Sobs hit keening levels but no one will ever hear or come
This is not a reality with a place for the likes of you
You are paying the full cost of having forgotten ever that this was the case
Rocking as the dog likes the salt from your face you croak out Bill-C-24
The dog no more like other dogs than you like people wages his tail
If you had croaked out good-boy he would have barely noticed

Days go on
The dog not afraid of course as you are a reality he is used to
The fear escalates and escalates
The math of thresholds and evoked potentials has you hoping most of the risk has passed
So too has anything that might help with the terror

On the day I was born a party was held
I wonder why as the 49 years that followed do not support it as joyous event.


Digital StillCameraPurk



I am not that self-driving in my blog. Searching for things to write about 7 months ago this was on the wish list  of a few people and I feel sure I am about to possibly miss the mark or not depending on where they are on their journey with the whole every human has different ways of operating , some of them not that functional but  the numbers advantage of what is officially seen as pathological is on the NT side.

I did  say that most of the things that get labelled all sorts of things but all of them grim labels about how autistics express themselves when it cannot be understood are in fact something one can understand for the most part.  They just don’t fit expectations.

Some are harder to work out than others but  repetition is a real skill set of the autistic. I tell my  dog the same not that funny,  not quite a joke, based on the Talmud every walk he has on  Shabbat   A strength of dogs of course is knowing this is the prelude to a walk and not being able to express that there are down right funny bits and sticking to the content from work prohibited on Shabbat (including taming a wild beast … For dogs this would be if they strain on the leash.  From the time I was 9 and the era of dogs taking me for a drag ended I have never had this issue.  My dogs would all be in the most likely to hide in my shadow hall of fame…. )

If I were say yelling that at a dog and concerned citizens came to help  well it is hard to know  if being Jewish would help much.  It might give a person an edge on knowing the phrase  and so it goes.

For the more usual kind  an autistic comes up with a way of expressing the same thing and sticks to it. It is not how neurologically typical children express it and thus it is harder to make sense of.  The desire is thankfully not missing in the people who asked me about this as one could of course just view it as content without meaning and go with the kinds of therapies that might indeed make a person make words that sound normal but do kill self-expression as that makes them seem unlike their peers.  I would hope so.

Thinking the goals of therapies belonging mainly to a specific set through  I don’t know if people even sense the implications. The “non-distinugishable from peers ” goal stands for so much and if someone just threw that out there in random shared space again and again we would suspect they are broken too.

It actually seems like less of an attempt to communicate than most poorly understood (other than for the joke with my dog by him ) things an autistic person says.

It is more of a trigger. Seeming like other children seems desirable at first glance and yet a first is all some ever give it.

The Prime Minister I wrote the inevitable best Prime Minister of Canada had this to say  in 1971 before the Ukrainian-Canadian Congress on the topic of average. While I suspect he did not suspect it would work for autism it does.  I will spare you over half of it to focus on children as it was parents who filed the request so to speak.  He said : What could be more absurd than the concept of an “all-Canadian” boy or girl? A society which emphasizes uniformity is one which creates intolerance and hate. A society which eulogizes the average citizen is one which breeds mediocrity. What the world
should be seeking, and what in Canada we must continue to cherish, are not concepts of
uniformity but human values: compassion, love, and understanding.  ” Pierre Elliott Trudeau- not to be confused one bit with our current Prime Minister… But the Greek Tragedy torments I sometimes play out for Justin …

Another example sort of as by  being very interested to an exponent a lot of what I say on a political theme is 875 levels  harder to understand than this so I could seem to have an impenetrable script going on when I am sure being able to read 150 year worth of Canadian political history with a surprisingly long period of in between eras history … in less than my remaining life span but as physics was my first big love and is hopelessly tangled with religion for reasons specific to me there is bad news…

If one viewed me as unlikely to ever have said anything of communicative value the words of pathology would drip out and as I sometimes keep productive speech in mid “help my Purkinje cells have an empirically validated issue and thus the background noise of my brain is Activate!  Alert! So one more thing or two depending on the day that one is not used to coping with and those topics I love enough to retreat into them on days where I am more self-regulating and the world has no demands and thus no public displays of “Autistics Gone Wild”  happen. This likely would be the Spring Break Edition as when still at an age when those happened they are odd breaks in routine.  A weekend is doable as weekends have their own things.   But this theft of time meant to be held at school and cycled through with bells ( I am old. I think perhaps they do not use them all of the time now and in fact they didn’t at the third Elementary school I went to.  But did again in higher grades

Back to how it works as an analogy.  The “indistinguishable from peers” is a phrase which parents, educators and funders responds to in a frighteningly Pavlovian way just as once notebooks were picked up in mid bell without thought and the mental calculations on if you were going to your locker or not tended to be done freeing you to ambulate without thought to the next destination.   So free that several random things could crop up on say the commute from the third floor to the annex (my locker was  on the lowest level so my brain would have deemed this a no but it was also often filled with garbage by other students so it sent its own don’t choose a pass by the locker signal to my brain .)

Autistic children tend to come equipped with parents not all of whom are autistic and thus a fear that they may never actually crack those codes and help their children who do at times seem distressed enough to create a state when the NT parent responds to this phrase and those that go with it in a way that then  is automatic.

The thing is other than in one case the wiring is different including actual brain cells that are marvels in the autistic the words that people know what they mean are similar. The need for them seems less clear as if say you are me and under stress you might not be able to talk, might talk very slowly, might have a few things you say, or have a lot to say on multiple topics some of which a degree or three would be helpful to even conclude the sounds are not random.    I don’t get to choose where I fall on those lines. I didn’t  even choose the things I would be interested enough to hit levels like these. At one point in my life something related to them hit my then much younger brain and as many of them were not of passing interest all the time and energy plus reading way faster than most ( I was afraid as a child I would run out of books. Then on seeing the books children my age were allowed to take out after pondering if this was a  plot to keep children stupid I wondered about things worth reading. Happily the autonomy to go to the library on my own – freeing me from the tyranny of the school’s rules was granted as weekly with my father would not cut it. )

Pierre Elliot had a point which does apply.  Obviously substitute a word for Canada but this very much applies to why as a goal fitting in with peers is a bad one.  Even if you ignore the whole we will never seem like our peers.  Efforts to stamp out the ways we do not leads to even stranger seeming things as it is much like taking the hand from a puppet.

If I scream Mulroney when I mean danger and Joe Clark when I mean a super hero is needed in the short-term as my kind of heroes tend to get that if they get to the main stage at all.   Well  I would never have gotten to do the things I did as an adult but you,, if you were Canadian and somehow unbiased as far as how things go might guess or might not.

One was so deeply honest that I do hate what process we view as fair does to the honest and ethical few who cross our screens as potentials for high office.   The other …  well more than the opposite.

The reason in adults politics is sometimes used as insight into personality is of course I identify with those who are honest and ethical and content of the need is there to battle it out well when the main field is lost however we can.  I use my dog to create awareness and as a non-shaming opener into if people are registered to vote.  Someone who has been Prime Minister even for 9 months and leader of a now dead party twice (you do not always win the grand battle in an obvious way or perhaps at all but the fight for a nation must go on) spoke to groups of concerned citizens.

I have my best Prime Minister who is not my political super-hero as 9 months was not enough and I have a best Prime Minister who never was (Stefan Dion).. I am clearly non-partisan as my hope which I knew would not win the day ( I have gotten fairly good at quantifying data bits in the sleep cycle of my brain.  Although this ability to know the data points and work with them is the  sphere of a policy wonk who will suspect there is no other kind as they have to know all other  forms of wonk but a data wonk would need a lot  of funding  and while policy does not change to fit new data odds are if you have ever written policy and are not  a big deal yet you will find yourself doing everything else anyway. You know for sure there are wonks to speak to best placement of announcements but you will know where to display them.  You will know what percentage of people respond to alliteration (enough that you may as well as it is less of a wild card than puns) .

These children and adults who say things that don’t seem  like they parse are not unlike others as fields have their own language which is called jargon until there is leakage.

I once did have the experience of being in Toronto (the place they send people to for conventions only I gather some people choose to live there which would make conventions a short commute ) for one issue and wandering into the reception area for a provincial political thing. Okay as politics is my thing that some Federal people were there was clear and a few even recognized me, not exactly greeter wonks if they exist.

An additional confusion even though I was sure it was the wrong province is they make convention type hotels so identical. I have sometimes suspected even down to the flooring and carpets.  Now if I had wandered into something I am not remotely interested in the signs would have been confusing. The overall tempo chaos – this is the case for the mythical normal person too.  Conventions seem like punishment pretty fast I suspect.  I mean when you think okay see parts of Canada I would not otherwise like cadets and it turns out to be mostly Toronto except provincially that will be Vancouver and if I go that close I do not want to be pondering the carpet on hour 7 of a vision statement nightmare.

Now as I mostly understand myself when I hit wondering if there is some odd thing going on with  carpeting I need an out and being fluent in  Re-visioning a Vision Statement  and how non-profits work.  I could raise a point of information that I felt sure was missing (it was) and make a motion that passed. I wanted out of a return trip the next weekend and I thought that enough voting people or perhaps any based on those looking at the clock instead of the carpet knew that you can just approve the pre-existing one.  Now this was not evil as the vision statement and it’s close relative the mission statement remained good fits and might have explained the zero progress on even the first.   Was it speedy and unanimous – of course.  No one likes a free trip and hotel room quite enough to keep doing the same pointless thing especially if they have no way out.

In children they often are expressing themselves and in my experience they may even have an everyday language way of doing it.  If though  someone or multiple people have been introduced to throw doubt or label what they are doing as

A child would say my name and watch often.  She had known given the as many functions as the budget allows watch I had that we shared this interest. Oddly some people owning a watch like mine change to different ones when not engaged in specific activities but then you have to put up with different weights and so on.

She lived in a place where the province only funded ABA and someone had out of  a fairly equally serving hope gone off to do the very short course in it. She had been lulled by the key phrases I think away from the instinct to look deeper.

The only true part may be the first A as it is applied but analysis does not go on. There is a goal and there are ways to reach it.  Compared to non-name brand versions the script is what substitutes for analysis .

So quick to label her repeated approach and statement as both perseverating and echolalia… Well  tenacity is an admirable attribute and echolalia is a fairly useless concept . I  seem to have it when distressed but that would make it meaningful and thus not echolalia.

Now I did point out  eventually that it should be viewed as repeated attempts to socially engage over a shared interest. That would be a good thing and that is the problem with all sorts of scripts and the words in them. They can conceal all that is meaningful or our belief that the words should match what we expect can get in the way of seeing them  as not a symptom but communication..

Communication is two-way and I am not advocating for it not mattering that if only family members eventually understand what the extreme scripts mean, that there might not be an issue that work could go towards.

If you have a traditional family with two parents and well 2.2 children seems a terrifying amount so they have three children and the youngest is autistic.  Now this family has concluded that the current methods are not acceptance based and thus they are trying to avoid all the buzz words and so on. Yet you still have a structure where 2 people have more power than three and 4 communicate much more like the rest most of the time.  They have their own way of saying things and develop code words perhaps meant to outwit the autistic youngest at an age, and experience  disadvantage already there is quickly good agreement how to speak about them in front of them and so on.

For awhile as a child I would call graveyards junkyards. They did seem to have much the same function but that was not why. Where we lived if you went out a bit you would see what were once mostly familial plots now neglected or the burial grounds of a small place that was no more.  Now unable to work out how I worked (one would think the whole I had anything to say at all might work as a reinforcement but alas… ) and on full alert as if this fully sealed in a car utterance might damage my family chose horses to warn each other that they had spotted one.

I love horses. Actually writing this now I wonder as I loved animals period you would think they would have chosen something terrifying like kindergarten teachers (not all of course but my experience was not good and as a child that is all you work from ) or if non-terror was the goal something neutral.

I of course looked all around and inevitably was quick to spot the junkyard..  Most of the car is still asking where and I have said the dreaded word. The words to explain the many things these semi-derelict plots of land summoned were not in me. I think of them so seldom now that I doubt they still are or if they are they would be a books worth.

In  Canada and  a few other places where such a question is not viewed as intrusive and the language does not have a way of asking about how one is and a way of answering that is more realistic and honest as ritually you can just acknowledge things go.  They do tend to until they don’t and save the details for people who care or a quieter moment or whatever.

The How are you script is one.  I am an adult so while I have serious doubts it doesn’t have a negative utility I understand it as things people are used to saying.  Having actually gotten very interested in this around 20 years ago I even can say with certainty that in the area I live in people are far more likely to notice if you simply leave the reply out.  They used to hear fine and move on to “That’s good. ” Now they wait which the first several hundreds of times was panic enough ( I had a middle period where things were set up in a way I encountered it less )   They might actually hear the humourous response or if they actually know you have caught on to how much you hate that question.

I was at a Bat Mitzvah on Saturday and accidentally arriving early (the only way it could happen as I did not get there on my own) after the first wave of people  who thought they might be running on “Jewish Standard Time” a phrase that represents the collective incapability of the majority of the “Tribe” to get to somewhere, into an area or even say good-bye in under several eons.  So that concern over  several people in a row asked the dread question then remembered to recall it.  Progress.

The overall point is when we tend to talk about scripts and autism we mean broken ones. As if they would have to be. Versus ones in a language with one fluent speaker if you ignore the whole they may mainly say words that seem random if they speak at all. All of communication and how people do should  inform that speech is a tiny fraction of it all but we live in very speech centered worlds.

People used to mean rote  taught social scripts or compliance with the main ones and how to get there.  No one who asked me about that meant that and I do believe I have had something to say about those in a post about honesty.

I would be the first to concede that it has to be deeply frustrating.  You have a child who does in fact as all tiny humans do, need you and while sometimes they seem upset in ways that call for fast actions what are they upset about.

That is the natural desire of parents and even having had no kids of my own this feeling when something is clearly upsetting a tiny human of my heart or might is huge.

Of course being disabled means I am a bit allergic to a the child most comply to this or that kind of thing. I mean sure at a certain point and in the right circumstances and worded exactly right  okay that level of ambivalence works best with the autistic kid who if you over-invest in an outcome will over-invest in the opposite. Adults too which I had forgotten until someone viewing me and my primary nurse one admission light years ago waged in a battle over my thermostat, asked her nurse to take me when she was discharged.

She had a brother on the spectrum and thus the specific issue might be different and I actually am not remotely flexible about the ideal temperature for a room which contains a bed and a me that has no issue requiring extremes ( science supports me even) .  Still this usually kind seeming nurse who seemed genuinely concerned if I did not die from not eating the cold would get me.  15 C  not being a temperature where that seems likely and yet  for me this was getting terrifying. I preferred to keep my head under a chair as the fancy beds you cannot even get under…

I spit data and examples of why  you should not sleep in a room that is heated to even room temperature with more desperation seeming more in need of worry which mainly comes down to the temperature in my room .  As my texture issues get worse with stress and a person who has lost an entire them and eventually then some is aware this is not a good outcome hence in theory my willingness to subject myself to an environment like that.

Watching with informed eyes without the usual elements someone saw a dynamic that she viewed as potentially very harmful for me.   If you did not speak English at all I would appear to be in danger and if you do that we both are awfully repetitive but I have more content but the situation would not have resolved without that other actor as the power is clearly not mine but  as my primary was on 8 hour shifts until the change I do have time to get more data which  I actually expect to help.  I mean most of me suspects it seldom does even with people with science degrees but it seems like it should.

The words I am saying are comprehensible although in a panic especially as she would get near the thermostat (oddly in promotional huge signs this ability to adjust it is highlighted ….  they actually changed the lowest they could go sometime after this… Grr .  The power imbalance will always win out in the end.  It’s okay I actually know how to trigger the cooling of the room despite cool air entering.   Takes more fiddling depending on the side of the building and you do need to be ambulatory which can take time or people will agree when you answer the if they can do anything with an actual request (again an actual deviation from the majority of times …. but if I am sick I am not going to decide if you actually want to be useful or are just saying that before you go even if you helpfully add “Before I go” to the mix.

You could need multiple people or one autistic one who is also strong and slightly fearless as far as weighing my need over non-logic based authority.

I see these blogs that are a few sentences and have 100,000 views a day and thus I should wrap it up… I like to write if I feel like it which is seldom.  I doubt that that will happen here.  Still overall versus looking for some key thing that might crack a code consider how many ways people speak every day that would not be easily understood.

I am 49 and thus I have in theory learned that  when shopping being asked how I am is not actually the queue for my research (not at the check-out as that is poor science ) or a queue for me to say what I think of being asked which does happen and I do tend to feel badly as of course I know they are expected to ask and small wins are temporary.  Some stores add “Did you find everything you were looking for?” and I think now that is a utilitarian phrase that might help someone. Not me as I hit the checkout when maximum tolerance for the activity is hit which varies but I will never have a hard to find object in mind as if a person is up to it you can ask the many more employees out there in the shelves who tend to know and as a bonus do not have to page themselves.

Stores seem a venue which just have to make it hard as those that ask this have a follow-up question and it is How are you or a variation that makes sense  as it doesn’t following that yet not all stores seem to get that even pretend concern for a stranger that is not in danger other than perhaps escaping without having spent more money  cannot come after utility.

It sounds odd every time and try as I might to give positive feedback on the useful bit even if not for me ( I do care about society in general or I would just give up but that does not seem to be in my skill set or 49 years of defeat might make me think I could . Not on this topic but all of them.  Country seems like it might make a shift away from so centrist outsiders see it as boring to arms – well pens, photocopiers, board rooms, and so on.   Although for that one there are times when even if you suspect a bit after most people have fled that this is yet another windmill tilted at  this phrase is supposed to mean hopeless.

For me it is more of an inspirational bit. If you tilt at a windmill. That is attempt to joust with one it will unseat you. The windmill tends to win.  Now sometimes people use this too soon and they are wrong.  Still there is a phrase about getting back on a horse which makes me wonder why this is not a motivational phrase for others.

Some windmills are worth a good effort and yes  you may have to get back on your horse a lot or while on the ground you find the means to mess up the workings and you only need to fall 47 more times to get enough of it in the cogs to end that match.

My scripts about scripts may be broken but tenacity being a bit key  if the reason for wanting to know more is concern and it was then that over time how the individual expresses or does not express themselves will become clear.

My  dog has a specific position for in his opinion I should not get up. Not an overall desire of a pet to keep their human close as my dog is far more but one where the third or 23rd time I moved him and then fell in a way that could not be attributed to lateral instability or any other thing I learned do not move the dog. He has another one when he is angry that Swedish exists but torn because he does love Netflix.  He has yet another for my human is explaining that given no human he knows speaks the dialect of Danish on all shows I have seen so far, and  The Bridge is still in production so unless a word that actually does mean the opposite in Danish or something else entirely comes along (hardly any and he would have heard enough jokes to want to choke someone if he were a native Speaker of Danish )  this seems extreme.  Also as for awhile he was launching the app himself ( I was trying to avoid typing so it was pretty easy as I had a second screen and that was the only icon on it… As big as I could make it.   Okay compared to channel surfing which he also does launching and app is a bit harder maybe..

Now my dog is not like most dogs.  He is after all a dog I have had since he was 8 weeks old and thus the amount of development his brain had as a bonus feature of me must be up there.   He developed a very extreme grooming phobia a few years ago. He was never a fan but tackled an item per day it was possible

His nails are the worst and thus the whole dog suffers so we are on a paw per day when all other things are at least not falling apart. Now when he was upset and in between so wild he cannot be expected to know who I am and all that a familiar kind of setting as he hits he might other people and other dogs as he is calming slightly “Good Boy” and all the things people say to other dogs.  Mine does not speak he Converses but as he is a dog that I never labelled anything correctly ( I paired all the must haves with a sign of course as best practices in puppy  rearing suggest….  ) Ready for bonus content on day one while I was hoping he would say something that would get him commercial work he began to learn about politics . While he can say two words or a word and a half more accurately  they are in Hebrew and Aramaic (hence the half)  . Not coming soon to a commercial near you although  stunning support workers when this developed…

They seem equally  as stunned by what will either be  lengthy on Aramaic speech   or reasons why the dog knows what I mean as I asked for the beginning of a specifically named prayer in Aramaic (  Aramaic is used when we say it but it is always explained in a service which I find odd the days everyone there would know it but people do get used to saying the same things at the same time. )

So my dog stuck in his hard cycle where he is still upset but worried he has hurt me I say the names of  bills too. Prorogation works very well and the voting record of our current Prime Minister before becoming one is pure calming gold. Now if you knew nothing of Canada or how systems of government which include prorogation (grr…  My dog) work it would seem like a script and one for  an  extreme need even. I need the dog to understand if it were legal I would find the groomer who made it this bad and do something similar to them.  I need him to know I am not mad about what he has done at a time when he was in between states so he regrets doing it and knows he has.

He and I have a language and body language system that goes both ways although being less used to it meaning something  as I am a cushion to my dog anyway I was at a disadvantage.   If you knew I had a diagnosis then the odd things I say to my dog could make sense due to that not due to knowing that he is very used to those phrases and will return him to engage the voters mode which is better than terrified  two different ways.

My benign intent and even that it was working and that someone else would say the wrong things for him .   He is the product of his species.. his genes, his brain before I got him, the rather more stimulating situation I provide a dog, our shared experiences and so on.

It can be easy to doubt that early on if you are an NT parent of an autistic child… But you do have shared experiences you just archive them differently and they might mean different things . I would guess some people wanting to know what their child means when they say lunar rover while seeming distressed (random example) might really want there to be an autistic Rosetta Stone (the real one not the product ) .

I sometimes feel at an unfair advantage as their have been times when meeting a child for the first time everything is just so much easier. Okay it tends to go that way. But all the pesky bits of communication that are not speech have a different default setting in me. I do not consciously think about how I do things other than some make sense for the size say of an individual child or that I do things in what might seem to call for more drastic action in a non-drastic way.  ( Child has fled the comments non-related, non-close to the family adults feel they can make and what they are judging him on means a lot to him as of recently when he realized this was a role he had.    Entering his room his distress is obvious and he may be ramping up.   I have watched people try to  stop the pacing or the 4 different topics or whatever for other kids ..  I got low to the ground and eventually  his pacing turned to spirals and thus when he leaned on me I could say the only true things . Not that it would be okay because how would I know …. That he was important .  Then what would happen due to that  so that when and if he came back  the big deal things would be waiting.

People are so used to stock phrases that they can be hard to recall even if you know that he might go off in a way that could be physically painful if you lie. I have seen him and the equally stunned issues of why and they were trying to help and how was what the person said even a lie…

I mean if being looked to for a post kick to a body part that well hurts enough that the testimony to the desire to understand that it is to ask when eyes are still watering… doesn’t mean that the set of things a parent says or how they act is wrong so much as a poor fit and that the right fit is a long process .

Like my blogs. No short answers.

Dear Dad

My father passed away almost three years ago.  Unlike my mother what to say was difficult.  What to meditate on in advance.

As I sat contemplating this as I felt I had failed him somehow as throwing him in as part of an other issue would not do it. I thought as I ate near where I would go to observe his second yartzeit ( the anniversary of his death ) a lot about the contradictions in him.. He never said he loved me. Not once.  He in theory did not believe in love and I had thought for a long time that to respect his belief system I should not love him but he was my father. Love was inevitable  when I set that aside.

I wrote this before that service as my status on Facebook:

Dear Dad,

Two years and I miss you still. You were not an easy father but it was you who told me the most about what it was to be me. You taught me things when some might have wondered why. Those dark starlit nights when for a man who said there was no such thing as beauty you sat transfixed by the night sky.

You said love, beauty and G-d were for others. Those not intelligent enough to endure this world without them. I tried to respect your belief system although I was your genetic challenge who in my teens you threw a book across the room and asked if I could not see I had surpassed you.

You never seemed to realize the grim realities which could have come to pass if you were not stubborn on my behalf early on. Or maybe you did and that was part of your anger. I will never know.

In the end you were proud I had reclaimed a heritage I always suspected scared you. Your drive to convince me on all three points seems now an extreme version of protecting me. Beauty can be transient, love may fade or fail to take root, and well G-d, the hardest one to convince me was for others, can seem absent when it is hard to understand why. Free will as a gift given the nature of humans can seem small comfort.

You joked a lot when we visited the last winter of Mom’s life. Calling me rabbi so often I said keep it up and I would become one before I had a doctorate. Your confidence unshaken by my small life you asked,”Why not both? ”

You held me briefly as I came in from my nightly visit with James and said “Out of everyone only you had the courage to be a Jew.” You said it fiercely but Far you never managed to convince me for long on any part of your beliefs. So I knew this was pride and love however hard you made your voice.

So I do love you. I look at pictures and wonder how you convinced yourself it was not real. Broken so completely when Mom died that to live without having loved may be easier. I don’t know.

One of the last conversations we had you seemed about to cry over religions so beautiful you had seen in Malaysia that may have died. I said it could be they were worshiping outdoors and belong to one of the many religions going strong. Again with confidence I do not have you said you had books from then not all of which you were sure of the language of but I could work it out.

Being your daughter was often hard in ways it did not need to be. All the same you were the best father for me. I love you and tonight I will praise the G-d you could not bring yourself to believe in , in your memory. For two years that you fit no meditation I could find drove me to epic levels of writer’s block.

I suppose this is it then. I love you and I will miss you always because this planet is indeed a lonely place without you.


Why now and not when it has been three years?

I was at the beach yesterday and I thought of my father. Not that he was a beach goer but the year he got a metal detector for his birthday my mother needed to stay out of the sun for another week.   She gave him instructions on how much I needed to swim but she thought I would be fine with going to the other lake nearby  for the sake of our joint treasure hunting.

We found very little but we faithfully recorded those finds. ( See photo of a huge treasure day above)

It had been a long time since I had done an activity with my father. As a young child we used to go to a river to picnic and fish. The whole I never caught one makes me wonder if they even had fish .

My father would die without ever saying he loved me.  I do know he did even if the words never hit his lips.

However hard he made some part of life there is so little point to hanging onto that part of things.  Those hardships we did not have too have and well a long list of other things.

Those distant treasure hunts now seem a treasure in themselves.  As one who struggled with the concept of love  but did work it out the many reasons why my father may have never gotten fully there are clear enough.

Yet in so many pictures he seems happy with me.  The years that would follow that summer were more sickness focused although my mother and I would swim her final summer as always I felt sure it was indeed the final time.

I face several medical challenges and despite my parents not usually having much to do with those  they come to mind.

I do not grieve some idealized version of the parents I never had. It is the flawed but sometimes surprising parents of my reality I miss.  There was a time I thought that would never be the case but even if it took two years to know what to say in lieu of a mediation before prayer and longer still to complete the task as far as it really did seem wrong to just carry on blogging without at least trying to be fair. It is not the intense writing of  a fresh loss but my father is a hard man to nail down with words.

When I was young enough others might have doubts he said one starlit night that I would be lonely due to being so smart.   He died believing I had the capability to do more.  Maybe and maybe not.  But this unshaken faith that the finish line to some lofty goal could be reached  is a gift I think .   I have heard parents say much the opposite. Parents who perhaps seem more typical in so many ways so I know this acknowledgement of a pride in doing what he could not as far as live as a Jew, was real as was his belief I could still get a doctorate and become a rabbi.

When I was in cadets for some reason the thought that he was one became stuck in the Regimental Chaplain’s brain and several others would also call him that.

My father had had to leave school very early on due to the Second World War and he always wanted more learning.  This part of a heritage that he had feared was one he did stress as he saw that as a positive part of it. The rest of course given the course of his childhood were difficult for him.  Then thinking it safe here, the year I was 12, he had a horrible incident on the US border at a remote crossing.

Paged after a parade I was in with cadets to see the parade marshal . I did and it said to go to my aunt and uncle’s house. It was close and I went there.  My father was shaking.  My aunt suggested I go and find my cousin but he wanted me there to see and to hear what had happened.

Many years later when I would be a victim of a hate crime which initially seemed random but I was the only one to think that in a country which for no logical reason seems like the scariest place for it to happen he would apologize for the facial features that were his.

He  had said as one can add to the rules of survival when he was traumatized that I should only cross the border with very Canadian people. Thus I have crossed all of once by land.  That is how such rules work.  There were a lot of them he had taught me before but ultimately the inherent logic is you are alive due to them .

People are products of not just genes but experience and there were experiences if I could I would have wished changed for my father but they may have been what made him such a staunch advocate and ultimately a proud father that I had finally gotten the task done.

I will never know what I love you would have sounded like from his mouth but I do know what pride, confidence , worry , and so on sounded like. As I said it is a topic I struggled with and perhaps lacking a reason to work out if what he was feeling might bee love he never did quite get there in words. In deeds though and in other words he did indeed.