On Recognizing our Own

Gorgeous, violent, Raging and a Very Unsweet 16.  That is the title of the episode of Dr. Phil that I am currently suffering through.  And I do mean suffering.  This episode chronicles a family of a child that is very likely PDA/Autistic.  One of the quotes from Mom was ‘It is just not worth the battle of trying to make her go to school.  I give up.  I give up parenting because I get attacked’.  For God’s Sake Mom!  Has it never occurred to you to look behind the reasons why she is acting this way? Triggering to say the least.  And in this very moment, I realize why I despise ‘Dr.’ Phil.  Calling the child a brat.  Enforcing the reward system.  Sending children to ‘camps’ or ‘rehabilitation centers’…

And yet I am torn.  Because so many parents really do not get it.  I know I didn’t when my boys were in school.  When they were infants/toddlers I parented by instinct; I seemed to know what the boys wanted and simply got it for them.  I often blamed myself for the diagnosis of Autism in the beginning.  Autism was presented to me as a bad thing, something to ‘cope’ with.   Was I too smothering, did I too to much instead of teaching them how to do it? Did I “cause” or “enable” their Autism? Yet the boys were happy; always smiling and if they were crying I was able to figure out why and fix it.  And it felt good, and natural.  But I was made to feel as though I were ‘spoiling’ them.  It was not until they began their formal education that I was immersed in the ‘We have to make them normal’ lifestyle.  I KNEW my boys needed more support starting in Kindergarten.  But the way the supports are set up here, they MUST allow/force them to survive with the LEAST amounts of supports, and fail, before new supports are considered.  Read. That. Again.  Set up.  To fail.  HOW does that support the child???     I still cannot fathom the idea.

Fast forward to elementary school.  I was going through a horrible marriage.  I was struggling with a lot of personal things.  I basically checked out for 2-3 years, going through the motions and basically allowing whatever the ‘professionals’ thought was best to happen.  I was not entirely 100% (or even 50% present) other than ensuring basic needs were met; food, housing, hygiene.  I missed out on a lot.  I mean a LOT.

Towards the beginning of their middle school years I’d come around.  I was able to rally.  I started to question the authorities I’d been listening too, even those that claimed to be authorities on Autism.  Where I had previously fallen for the bait, hook line and sinker, I was now wondering if there wasn’t a better way to advocate than endless IEP meetings?  I was made to feel ashamed for wanting my children to have every accommodation possible in mainstream school.  In my mind I KNEW my boys would be able to do the things they needed, in their own time.  But that is not allowed in school.  One must keep up.  One must meet benchmarks set on chronological age and NOT by ability.  To me, this is so unfair and unreasonable.  (Little did I know I was Autistic at the time.  I thought I was just a no-good mom).

At the end of middle school I chose what sounded like a decent solution; a ‘charter’ school that has smaller class sizes but would still honor an IEP and was free.  It was what is called a “STEM” based school (Science, Technology, Engineering and Math).  Perfect!  One son is really into animals (Science) and the other is incredible at designing entire worlds in Minecraft (Engineering).  Math is a HORRIBLE subject for both of them but the school convinced me they would get support to help them through it.

Second. Worst. Decision. Of my life.  My boys were MISERABLE.  I was slowly coming to the realization that I too thought differently, communicate differently, felt differently, than most of my peers.  I had wonderful support once I actually sought out #actuallyautistic voices, websites, groups and relationships.  One woman changed my life.  Was my catalyst.  I am wandering now or I’d go into more specifics, but suffice it to say that she changed our lives 1000% for the better when I was able to realize that I simply was not able to handle the processing skills needed to help my boys through mainstream education.  Once I was able to realize that, yet still wanted the best for all our mental health, I was able to start advocating.  A school was suggested, a private school, that perfectly met all our needs.  Research was done, funding was secured, and the blossoming of my now teenage sons has begun.  They no longer say they would ‘Rather die than go to school’.  While one says he ‘still doesn’t like the IDEA of school’ but he ‘loves new school’, I am beyond thrilled.  This has allowed me to allot more spoons to advocacy and learning how to advocate.  I can devote more time to researching and learning from my Autistic peers.  I feel joy in my heart where I once felt shame.  My instincts are correct, I can understand and teach my boys how to self-advocate.  Their self-esteem and awareness have increased exponentially.  My boys are valued, respected and made to feel at ease in their new school.  They are given increasing responsibilities (One is in charge of care of the school cats, the other in charge of the chickens) and praised at every opportunity.  They feel loved and secure.  I am beyond blessed.

So eff you, Dr. Phil, for not seeing the neurodivergent child inside the behaviors.  Eff you for parent shaming and victim blaming.  You love to tout your ‘Forensic Psychology’ expertise but where the fuck is your insight?

Swan Song

Swan Song

Dear parents of Autistic Kids who have questions.

Your questions, your worries and fears are valid.  No one is shaming you for asking.

But we are tired.  So I will summarize for you, and for us.

Your child will develop as they will with or without interventions, therapies, diets or medications.

Pay attention to their medical and MENTAL health first and foremost.

Acceptance of who they are in the moment is most important.  Letting them know they are loved and they are NOT a burden.  That they are valued for who they are currently is an immense relief to an Autistic human.  Do NOT wish for them to change.  They simply can’t.

Prepare to care for them all their (and your) lives.  If you don’t have to in the end, that is a bonus. But set up financial supports, housing accommodations, and transportation.  Become familiar with how to navigate governmental supports, sign the up for Social Security/Disability benefits.  Hope for the best but prepare for the worst.

In the US, don’t waste time with IEPs and the like.  The public school system is beyond repair, and the private school system only puts emphasis on the highest achievers.  Pull your children, homeschool (you can do homeschool at night after work, you can unschool, you can do any type of learning you like.)  Instead, connect with your child, be present, get to know them.  Understand their world supersedes the normal boundaries of traditional schooling.  Forget the “honor roll my kid will go to Harvard” societal pressures.  They may, or they may not.  But I have never heard, in any college valedictorian speech, a student say “Oh thank GOODNESS for my IEP in Ms. Castle’s 4^th grade class or I wouldn’t be here”.  No. They thank their parents first, for believing in them, and their capabilities.

Your child who is self-harming at 2, 4, 6, 8 years old will stop if met with adjustments to their environment.  Behavior is communication, you just have to know how to listen.  And if you think acting out against others (throwing things, hitting others, kicking, pinching, etc) is not self-harm, in the end the result is the same.  They lash out at others and in the end the offender is the one who gets in trouble; their physical actions cause mental anguish and punishment, so yes, even that is self-harm. 

There is no right or wrong way to play, make eye contact, write, jump, spin or bounce.  You created a child.  Your child is different.  Yes, it will require adjustments.  Yes, it might cost extra money.  It is up to you, as the adult, to figure out how to make these adjustments.  It is not up to your child to conform to societal norms to make life easier for you. 

You cannot therapize, take classes, or medicate the Autistic out of your child.  You CAN acknowledge, celebrate, and accommodate their differences.  Even the best of Autistic advocates out there will say, the ability to be truly themselves is the only thing that gives them respite.  We can educate the general public as to how different types of therapies offered by the so-called ‘experts’ are wrong, but the ultimate power lies in your (the parent’s) hands. 

So when you ask questions like ‘Do you still line up toys?’ it elicits an eye-roll from me.  ‘How do I get my child to:…..” makes me cringe. 

I GET IT.  I really do.  But please, please just get off the computer and go to your child and just be in the same room.  Observe them.  See what they seem to like, what they gravitate towards.  Encourage that. You are their champion, YOU are their therapist, YOU are the one who will make them see that the way they navigate the world is totally A-Ok.  And that they don’t have to change. 

The child will grow, behaviors will change, it will not be linear. Milestones will be missed. Some 8 or 18 year old’s will wear diapers, it is not up to you to promote or prevent that.  It is up to you to be along for the ride, celebrating who they are, loving to spend time with them unconditionally.  Getting help for respite, communication needs, (as the child chooses to communicate) is totally ok.  But asking for advice on how to make your ND child less ND is just… no.  They will not grow out of being Autistic.  They may grow out of self-harming behaviors given the right environment.  They might find a love of learning if presented on their own timeline and interests.  They might be able to navigate the world on their own; learn to take a bus, drive, work, live independently.  Or, they might not.  But it is not due to any failure on your part… unless you spend more time trying to learn HOW to help them instead of on just learning about your child’s interests, what makes them most comfortable, and able to be themselves.

Hope this helps.

On The Bridge

We all talk about crossing that bridge when we come to it. 

Well, the bridge came.

Sooner than expected.

I was not prepared.

I was not educated as to what to expect.

I naively, thought that life would continue as usual.

Here, in the US, when your children turn 18, but are not REALLY 18, how do you cope without violating their rights?

I’ve no interest in conservatorship, educational or otherwise.

Yet, they are not ready to advocate for themselves.

Whose job is it to recognize this?

 When you are told that your rights are terminated as a parent, how do you cope?

I wish I had made this my special interest when they were around 12.

I could have been an expert.

I should have had the answers.

But now I am pressured, they are pressured, and time has sped up exponentially.

And no one has the answers.

Everyday life does not stop to advocate for one’s children.

Especially when they reach the age of ‘matriculation’.

It would be understandable if they were 6 or 8… but at 18?

The world expects you to have figured it out.

I feel caught out.

Naked.

In full view.

I’m trying my best to hide it, but it feels like I’m covering myself behind nothing more than a tea towel.

However, I have, in my arsenal, a strong belief.

A belief that others, who have gone before me, have the answers.

I’ve just not asked the right person yet.

So I ask all of you… what’s next?  How do I do it? 

How do I continue to work full time, gain answers from adversarial authorities, do laundry, sweep and mop the floor? 

How do I continue to support my children, who are light years behind their peers, whilst being told I’m no longer needed and/or able to?

This is my heart crying out for help, in a way I’ve not felt for ages.

I hate it.

I hate asking for help.

I hate that I have to.

It leaves such a metallic taste in my mouth; I’m nauseous and have strange dreams nightly to the point that I sleep in ‘naps’ (about 4-5 hours at a time). 

But the face I put on for my children is strong.  I teach them to the best of my ability; which turns out is not enough.

I now need to teach them what they do not know. 

Which is a lot. 

Which leads me to think I’ve been lazy; I’ve been slack.. I’ve not taught them how to learn…

But.

I NEVER LEARENED MYSELF.

So how can I teach them what I never knew?

How can I teach them to ‘study’?

How can I teach them how to make ‘good grades’?

When the authorities are telling me It’s too late?

According to some arbitrary passing of the earth around the sun, they should “know by now”

But they don’t.

And I don’t.

And I don’t.

Know how.

To help them.

On Melancholy

Before the world became cruel

You were so innocent and small.

The thought of sad times never crossed your minds.

You had no idea that this would be one of the last times your Father and I were truly happy.

And to be honest, we probably weren’t happy together even in those moments.

But you were.

You had no clue.  There was only joy and happiness and excitement for the adventure.

But I was happy to be experiencing it through your eyes,

And you had no idea what was to come in the future.

I wish it hadn’t come.

I wish I could transport you back to that magical sunset.

The love you shared with each other, and with us, your parents.

For a while, we were a family.

For better or worse.

But for you, in this moment, captured so beautifully,

Nothing but radiant love pouring forth before a

Magnificent sunset on a

Perfect day.

This is a melancholy memory.

I am proud of who we are.

Yet a part of me yearns for who we were.

I wish I would have guarded your hearts

On Missing the Signs

Things I missed when I didn’t know I was Autistic

Sometimes the memories come flooding back.  It could be a smell, a sight, the way the wind blows my hair around.  Sometimes, I remember things that leave a bittersweet feeling in my gut that is so palpable it is almost like reliving it. 

Tonight, I remembered getting a particular necklace for a birthday (or maybe it was Chanukah?) gift.  They were all the rage at the time.  I must have been around 11 or 12?  It was a metal necklace, in the shape of a snake, with the mouth of the snake grasping the body as a clasp.  It hung like a tie around one’s neck and was long-ish and adjustable.  I remember the weight of it, the smell of it. 

And I didn’t like it.  Oh, how I wanted this thing, and once I received it, I really really TRIED to like it.  To love it.  But I could taste the metal in my mouth.  It felt cold and somewhat rough.  It was heavier than I imagined.  Felt constricting (ha see what I did there?) 

But how did I tell my well-meaning Mother, who presented it with such love in her eyes, thinking she had bought me the most perfect gift?  So I wore it.  I wore it to school and was so uncomfortable in my own skin… and it showed.  I felt like an imposter.  Here I was, wearing this cool thing, but yet it wasn’t the EXACT cool thing (we were a family on a budget) and I knew that but yet.. and yet.. I wore it.  To not wear it would have seemed ungrateful, and I really WAS grateful that they had at least tried to get me something I wanted so badly.  I could see the other kids snickering behind their hands as I strove to be fashionable (and failing again).   I stubbornly refused to accept that I was at odds with my new gift.  I tried to make myself find ways to tolerate it. 

I did not know how to bring myself to tell my parents, “This is not the thing I thought I wanted.  It is too heavy.  It smells.  I can taste it in my mouth.  I don’t want to wear it, thank you very much.” 

So, eventually, it broke.  Did I break it on purpose? No… but my constant fidgeting with it (Autistic much?) caused the clasp to break, and so, I was relieved of the weight of the wanted/unwanted gift.  I was filled with remorse and relief at the same time.  My parents were mildly upset, I was more so.  I felt as though I had failed, I doubted myself and my choices in fashion even more.  I wasn’t meant to be popular, I wasn’t meant to fit in. It hurt then, and watching my parents try to help me hurt even more.  I think that was the beginning of me learning to become more comfortable with being an outsider, accepting that I would never be accepted except by a select few.  But I felt it, deep in my soul.    

The point to sharing this with you is to say, dear parents, that if you get your child that toy or thing that they have been begging for, only to find it lying discarded days later; please don’t get upset.  Don’t make a big deal out of it.  Your child may not have the ability to tell you exactly why it wasn’t ‘just right’ and know that they are just as disappointed as you are.  Just keep trying, because eventually, you will get them the thing that is perfect.  In the meantime, the most precious thing you will ever get them is your understanding that the thing was disappointing, that the blame does not fall on the child, and that you think they are the most wonderful person in the world for recognizing it and allowing them to set it aside.

On Growth

A few years ago, I was approached and asked by a photographer/author about participating in a book she was working on about Autism.  I was honored, especially when she asked that I write a short piece to go along with the picture she took of my teenage sons.  That piece was the catalyst that launched Autistically Real.  In those three years, I can see how I’ve grown, how my advocacy has shifted towards acceptance, and I am proud of the work I have done. 

The book is published and it is indeed beautiful.  It is also full of some language and tones that I no longer align with; however, I don’t know how to tell a person that their baby, that took 3 years to be born, is well, just wrong.  So, while I will not promote the purchase of the book nor encourage people to read it, I did want to share a paragraph of the preface, written about the photograph of my sons.  It reads as follows:

“The photograph of two ungainly adolescents crunched in an unused stone fireplace is odd, you think, at least at first.  They are all arms and long, folded legs.  They are of similar age, similarly dressed and you conclude they must be twins.  Your eye moves back and forth between them because the brothers are given equal weight of importance by the photographer.  It is a picture of two boys, though only one engages with the photographer while the other appears to be in his own thoughts.  In their colorfully striped shirts, the boys are like tender flowers next to the bland colored bricks.  They stand out in the photo as they might stand out in society – as different.  And richly individual.”   Credit: Margaret Sotor ‘Visible Spectrum’

A slow realization crept over me as I read those words in print. In a newly pressed book, full of the smells of fresh pulp and the feeling of smooth paper with the weight of the cover and binding in my hands.  This picture, and the thoughts I was asked to share regarding it, were the start of a journey that is far from over for me but seems like so long ago.  It was the beginning of questioning all that I knew, all that I had been taught, and like a toddler, I wobbled my way towards learning from #actuallyautistic people.  But like a toddler, I grew.  With the nurturing patience from my newfound community, I was able to understand that standing out in society – as different, is indeed, being richly individual.  And there is nothing. Wrong. With that.   

On Imploding

The clock winding down

How many hours of sleep?

Regardless of physical exhaustion or needs

Time keeps ticking

Ramped up triggered ranting raving

The hours creep past

Must do the things in the morning

But can’t do the things

The basic self care that others take for granted

I simply cannot do

But yet, Time, the ever elusive, made up conundrum

Marches forward

Reminding me that yet again, I will start the day

Exhausted

Unprepared

Scattered

Shattered

So much to be done and so little time

Am I Alice? 

This is no Wonderland

To me this is Hell

Missing the minutes passed submerged in details of what is emotionally and mentally important

Forgetting and ignoring the physically important

Until I fear that it will all blow up

Come to some sort of reckoning, that yet,

Once again,

I am not to meant to be of this world.

I am not meant to survive in the ways of the world.

That the world is too NT for me

Never to be understood

Always striving to ‘be better, do better’ yet.. and yet…

Not being able to.

Being kind to self is hard, but it is what I must do

In order

To not

Implode

On forgetting the rules

They say we don’t like crowds.  Or loud noises.  They say we prefer to live in our own world, as if we can shut out the stimuli around us at will. 

Last night, as I stood in a crowded music hall being carried back to my 20 something year old self, dancing badly, uanbashadly to the music, I forgot all that.  I forgot that I was supposed to hate being ‘social’.  I forgot that it was too loud.  I dropped everything and let myself get lost in the moment of seeing a group of people up on a stage engage and invigorate a crowd, bringing them together in a way only live music can.  I also probably forgot that I wasn’t supposed to be ‘overly enthusiastic’; my cheers were probably way too loud, my awkward body movements did not match those of the 20-30 somethings around me.  I forgot that I am not exactly what would be considered beautiful, that people might be offended or even mocking of my becoming lost in the moment while I jumped, spun and moved my body to the rhythm of songs that shaped my early adulthood in my middle-aged, paunchy body.  I clapped loudly and enthusiastically, showing my appreciation for the artistry and magic that was happening around me.  I took no notice of the other patrons, and in retrospect I suppose I felt invisible myself, becoming lost in the moment and the memories.  I am sure some laughed, pointed, rolled eyes, thought I was ‘weird.

I did not care. 

Even when I fell on my ass after a particularly ill-planned dance move and was helped up by some lovely humans who also recovered my ID and debit card, I did not care. 

Feeling the beat of the drums and bass in my chest and feet, combined with the melodic guitar and keyboard riffs complimenting the lead singer’s vocal performance and charisma, I was transported back to the ‘80s, perhaps the only time in my life that I was truly happy.  I felt free, unencumbered by the chains of social niceties, brain fuzzy and stimmy with the music that shaped me. 

I am not a stereotype.  I am a multi-faceted, brightly colored, unpolished gem.  I cannot help but forget to mask when the beat drops and the lights go down.  The music and the crowd’s energy carried me back to a time when I thought that everyone felt this way, that the appropriate reaction was to just react; to sway to the melodies and sing along with the lyrics (badly).  Some might have looked at me and thought I was drunk (I’d only had 2 drinks, weak ones at that lol).  I was uninhibited, my backbrain took over and although I felt like a part of the crowd, I was also completely alone, lost in myself and the connection I felt being entirely present in that moment. 

Some may call this overthinking; some may say ‘Eh, she went to a concert and had a good time, why is she dedicating a whole blog post about this?’  Some may have looked at me and thought I was so weird, out of my element, too old, too animated.

I don’t care.  I refuse to see myself as a caricature.   

I am writing this to say I see you; I see those that dance and spin and lose themselves in those moments where the world stops and the brain accepts that this feels exactly right.  Whether it be music, movies, books, or whatever your specialization is.  I see you, I hear you, and I fully respect you for allowing yourself the freedom to feel the joy and surge of adrenaline that makes you feel alive.  I cannot help but think of how the world would be such a better place if we all were more accepting and appreciative of those that feel more deeply, express more passionately and communicate in ways that are beyond words.  Please do more of this, unashamedly, unabashedly and without apology.  Please be you.  I’ll see you there…

On The Real World

My world IS the real world.  The only world I know.  It is sometimes filled with joy, but more often it is filled with struggling to just function and be… and that is fucking exhausting.  I am tired of being looked down upon due to a lack of education, for having big emotions, for being exactly who I am.  I am tired of being told my intuition is ‘not valid’.  (PS it IS.  I am always right when I ‘trust my gut’ when making decisions.)  Not that I haven’t made some bad decisions in my life, whooo boy have I made plenty!  But deep down, in the core of my being I knew that what I was doing wasn’t the ‘right’ thing. But I did it anyway.  While making those bad decisions, I was not being true to myself.  I did it because Reasons.

Reasons like being told I could when I couldn’t.  That I should be able to but wasn’t.  When I did and nobody noticed.  Being dismissed, felt to made less than because I wasn’t able to in that moment.  Being denied access to possibilities due to restrictive time schedules, lack of transportation or reliable communication. 

But most of all, the struggle is due to being misunderstood. 

I DO NOT FIT INTO ‘YOUR’ WORLD.  I do not fit into the social construct of normal society.  I just don’t.  I haven’t, and I never will, no matter how hard I try and lord knows I have tried over and over. 

And before you say “well everyone is a little weird” or ‘we all feel that way sometimes, put on your big girl panties and get over it’ believe me when I say that I cannot.  My brain simply does not function in the way yours does.  I have no capacity to see a means to an end. 

I have masked and suffered and pushed through towards endless meltdowns, shutdowns and breakdowns.  This has been my life, my whole life, since being born. 

Guess what?

It is tiring. It is exhausting. And it is only when I am allowed to function in my own way, to express myself through the pain, the writing, the tears and frustration that I truly feel at peace.

I am unable to change the world today.  I will unlikely be able to change the world tomorrow or even next week, or next year, or in the next decade. 

But I will be damned if I will allow my children to suffer the feelings I did, and still do to this day, due to the trauma inflicted by the well-meaning people.  I will always accept my children for being where and who they are at every minute of their lives. I will not force them to reach for fruit which seems so high above that is in unattainable, in exchange for their joyous existence.  I will never ask them to hide away the parts of them that make them who they are, to put away their interests and dreams. in exchange for the ‘real world’.  Because, if you say that I can’t live in ‘my’ world in a meaningful way, I sure as hell don’t want to live in yours. 

On Reading Between the Lines

Sometimes, in order to understand an Autistic person, you need to read between the lines.  Which is really funny, because, as an Autistic person, I am so very bad at that!  I fail to see nuance, to understand a ‘hint’, and when it is pointed out that I ‘should have known that was what they meant’, I feel ashamed and embarrassed.

Case in point.

I forgot to send meds that my kids usually take daily to my sister’s house when I dropped the boys off this morning at her house.  When I realized this, I thought ‘Oh, I can take them over after work’.

Well, work happened (very busy day) and I was wearing new shoes that were hurting my feet and I had to go home first to get the meds and when I got home, I just knew I couldn’t go out again.

So I called my sister, and told her that I just didn’t want to go out again in traffic (driving in traffic makes me anxious) and that I would give her the meds tomorrow.  

The issue is that the kids are going to an overnight camp Sat/Sun.  So they will miss a dose of meds.

In the back of my mind, I heard Ablest me saying ‘Hey, suck it up Buttercup I know you don’t want to do this, but it is the responsible thing to do!’

But the front of my mind couldn’t.  Not wouldn’t.  Not ‘just didn’t want to’.  Literally couldn’t. 

So I am hoping that my sister, who understands me well, was able to read between the lines and give me some grace.  And I hope that next time, I can tell her the truth.  That I am exhausted from wearing that mask all day.  That I am in physical pain and need my body and mind to rest.  I hope she understands that I have thought this through; missing a dose of their meds is not life threatening to my kids and will not negatively affect them.  I really hope she knows that I beat myself up about not being able to do the things worse than anyone else ever could. 

I hope she is able to read between the lines. 

On stopping the hate

I find it difficult to write about this at the moment, so I will share what my friends are doing here. To be direct, there is currently a research study underway that seems to support Eugenics and otherwise discrediting the value of Autistic Humans. Please give this a read and sign the petition:

https://form.jotform.com/aucademy/boycott-s10k?fbclid=IwAR3rOtrXFfFHBV87UZ7PCuu2Agb1iui8xi8ZNJTOTtMLMp35V7aLVyXivHM