Posts Tagged "acceptance"

Autism: Don’t Ask, Don’t Tell?

Posted by on Feb 19, 2014 | 4 comments

Autism: Don’t Ask, Don’t Tell?

I am very fortunate to have a vocal readership. I receive a lot of comments, messages, and emails via my Facebook page, here, and on redOrbit. Some are of the “me, too!” variety, many are requesting advice, others are autism parents reaching out to an understanding ear.

Then there are the rest. The criticisms, the angry voices opposed to what I’m saying, the ones I’m just not sure about. The ones that make me shake my head and say “wtf?”

Yes, I actually say “wtf.” Clearly, I’m a fourteen-year-old girl trapped in this forty-something brain.

Normally I shrug them off. Occasionally I address them, when I feel like the writer is completely out of line or misconstrued my intent. More often I simply thank them for taking the time to read my work. It’s always nice to be read, whether or not it’s appreciated.

This week I received an email, in response to this post, that not only got my attention, it really got my ire up. Instead of merely ignoring or answering the email, I thought it would be better played out here, where I can share it with a wider audience. I honestly believe this is a subject that should be talked about.

Loudly.

Here is the email I received:

Dear Wendy,
I am assuming your story ‘Dear Son, You Have Autism‘ is real.
I believe you should not label your son as autistic, definitely do not tell him about. He looks to me, based on your story, as quite normal.
Our understanding of psychology and the underlying chemistry is yet in the infancy.
We are ignoring the negative effects which the ‘modern ‘labelling’ may have on self esteem and confidence of children and young people. I am in fact terrified seeing how easily Educators and Psychologists (in fact ignorant in Chemistry, Biology, Medicine and many other relevant Sciences) are labelling our kids with the whole spectrum of disorders.
This also happened almost 40 years ago to my son, labelled (sic) as hypersensitive, almost abnormal – the label ‘autistic’ has (sic) not been yet in use.
He finished his tertiary education brilliantly, and is since years an IT expert co-working with a team of researchers on mysteries of our brain.
SXXXXX
ps. I worked my whole life as an academic, educator and researcher and remain very critical of many of the modern classification – labelling (sic) methodologies. In particular terrifying is that these people are ignoring huge probability of being wrong.

So many things to say here. Where should I begin? I think I’ll go through it line by line.

I am assuming your story ‘Dear Son, You Have Autism’ is real.

If you had taken the time to look at my website, you’d see that yes, in fact, our story is indeed true. I don’t write fiction.

I believe you should not label your son as autistic, definitely do not tell him about. He looks to me, based on  your story, as quite normal.

Tell me, how, exactly, does an autistic individual look? I’m guessing you don’t look ignorant, yet here we are.

What’s in a label? You call yourself an “academic,” and that’s a label. Some labels are pretty awesome. “Nobel Prize Winner.” “President.” “Canadian.” Why not call a spade a spade?

The larger issue here is the statement that my son looks, to you, “quite normal.” What, pray tell, is “normal?” Should I tell my son that since he can “pass” as normal, that he ought to? That he must hide his true identity, like the Jews in WWII, light-skinned blacks in the 1950’s and 1960’s and gay teenagers today?

That opinion puts you in pretty bad company. To insist that my child pretend he is something that he is not for your comfort or your ignorance or his safety makes you no better than the Klan in my book.

Harsh words, yes, but so is telling me to hide my child’s true self.

I have no more intention of keeping Jack’s autism from him than I have of keeping his place of birth or Scottish ancestory a secret.
Jack was born in Indianapolis. He is a direct descendent of William Wallace. And he has autism.

To say that my son should hide his autism like something to be ashamed of is absurd, ignorant, and discriminatory.
And I will not do it.

Our understanding of psychology and the underlying chemistry is yet in the infancy.
We are ignoring the negative effects which the ‘modern ‘labelling’ (sic) may have on self esteem and confidence of children and young people. I am in fact terrified seeing how easily Educators and Psychologists (in fact ignorant in Chemistry, Biology, Medicine and many other relevant Sciences) are labelling (sic) our kids with the whole spectrum of disorders.

This is true. It would also appear that you do not have a firm grasp on it yourself, or you would understand that a neurological variance such as autism is not something to be “terrified” of. Your statement that telling autistics that they are, in fact, autistic, will crush their self esteem and confidence is the exact reason we should. The opinion that someone with a difference should think of themselves as “less than” is antiquated at the very least.

What is that telling my son? That he should be ashamed of who he is? That he should wonder for the rest of his life why he doesn’t seem to think the same way as his peers? Why, when telling him the truth will set him free of wonder and worry?
I want my son, and all people with autism, to be proud of themselves. To be confident. To know that there are people out there, like yourself, who fear what they do not know and understand. Autistic individuals face enough difficulty and hardships in their daily lives, they shouldn’t have to add shame and fear to the mix.

We have evolved as a people. We are better than that.

This also happened almost 40 years ago to my son, labelled (sic) as hypersensitive, almost abnormal – the label ‘autistic’ has not been yet in use.
He finished his tertiary education brilliantly, and is since years an IT expert co-working with a team of researchers on mysteries of our brain.

At this point I would like to point out that you appear to have autism and ADHD/ADD conflated. Autism as a term has been around since the early 1900’s, and ADHD/ADD are not spectrum disorders. I am around the same age as your son, and I, too, was diagnosed (not “labeled”) with hyperkinesis, or being “hypersensitive” as a young child. I am not ashamed of it, nor do I believe it was an incorrect diagnosis.

You also seem to be assuming that we have not had our child assessed and diagnosed with professionals who know anything about biology, chemistry, medicine or neuroscience. You claim to be an academic, yet how much of these do you know? My child has been seen and assessed my no less than twenty professionals, including specialists in brain function, speech and early speech acquisition, sensory processing disorders (including fine and gross motor function), psychiatry, and numerous other disciplines.

They all agree: my child is incredibly intelligent, and definitely autistic.

I am pleased that your son finished his education brilliantly, yet saddened by the sense that you feel the need to justify him. He did not accomplish what he’s done in spite of who he is. He has triumphed because of who he is.

And that, my friend, is no less than what I want for my son.

So, I end this on a lighter note than when I began. I beseech you to keep your mind open to differences, and understand that children like mine may very well be the future.

Certainly, hiding in shadows and telling lies is no way to live anymore. History has told that story time and again.
I will leave you with the statement my son Jack has about having autism. This is his story, after all.

“Autism is not about your voice. It’s about your mind.”

And that’s all we have to say about that.

voice mind 2

 

A version of this post originally appeared on redOrbit blogs.

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Guess What? I Have Autism!

Posted by on Aug 5, 2013 | 2 comments

Guess What? I Have Autism!

“Hi! I’m Jack. I have autism.”

A sentence I wasn’t sure I was ready to hear. Yet, so pleased to see it exclaimed loudly and proudly.

Two weeks ago my husband David and I told Jack he has autism for the very first time. We’ve never hidden anything from him, we just wanted to wait until we were certain he’d be able to understand the gravity of it all to address it directly.

We discussed it for months in advance, tried to plan out what we wanted to say. And what we didn’t want to say. We decided to wait until the summer, so he would have time to adjust to his new reality unfettered by school stresses. We looked at books, we asked what others had told their children.

Summer came and we still waited. For the right time, the right place, the right… whatever.  We finally decided to take him out to lunch alone, where we could have a conversation without his brothers drawing focus. It would be perfect.

And we all know the best laid plans always go according to, well, plan.

The days passed and still no discussion, no lunch date. Then one day we were all sitting around the kitchen table doing arts and crafts and what-have-you. I looked at David, he looked at me and shrugged. It just seemed like a good time.

“Jack, do you know what autism is?”

He wasn’t sure, so we expanded on some things he already knew: people have different likes and dislikes, people don’t all look the same, people think differently.

That’s been a recurring theme in our family for years. Whenever one of the children asks why someone is a certain way, or why somebody likes something they don’t, or any time something is not the same as what they know, we say it.

“People’s lives are different.”

We knew someday Jack (or his brothers) would realize that he’s not like most of the other kids, and we wanted him to know that different is not wrong. It’s not strange. It’s not weird or funny or less than. Different is just different.

We described the spectrum, and how all people who have autism fit somewhere on it, but are not the same. That even within the autism community there are differences, and that’s OK.

We told him that autism is why sometimes sounds are too loud and lights are too bright and the Titan AE theme song drives him nuts (although to be fair, it’s really annoying). Autism is why he has a helper at school, and why he needs to run around in the halls periodically. It’s why he takes melatonin to sleep at night.

It’s also why he wants to know everything about every subject that interests him, and wants to share it all with anyone within earshot. It’s not why he’s curious, but it’s probably why he’s curiouser.

So when we said the words “you have autism” to Jack, and explained what we meant, he wasn’t upset. He wasn’t scared or troubled in any way. He was quite the opposite.

I’m pretty certain Jack believes he has some sort of super powers.

Which, of course, he does. Duh.

So, without further ado, Jack’s thoughts on autism.

On the concept of a spectrum, and where he falls on it (we told him he started in the middle, and now he’s toward the high-functioning end):

“It’s hard to read if you’re in the middle of the spectrum. You just have to show your parents the words.”

“If you’re way past schedule on learning, nothing will stop you from learning again and again and again to get to the other end of the spectrum.”

Jack does understand that not everyone can move from one end to the other, although his main concern about those individuals is that they may not be able to have sex properly to have children. He’s quite interested in the mechanics of having babies at the moment.

I’m certain he’ll have more to say on the non-sex aspect at a later date.

On the fact that he was born prematurely, and how that may have contributed to his autism (his correlation, not ours):

“If you’re early (premature) you have a lot more time to learn. If you’re past schedule (post-dates, like his brothers), you don’t have as much time to learn.”

So, according to Jack, he’s got one up on his brothers because he was born six weeks premature.

On early intervention (he started services when he was 23 months old), and the important role parents have in the therapy process:

“You (parents) helped me learn. You also brought someone else over to help teach me to learn.”

“It’s all because of my parents that other people came and taught me. So parents do help out with learning, not just school and other classes. Mostly parents. But mostly school.”

Um, thanks?

“And you learn mostly everything at university.”

OK then.

Some random thoughts on autism:

“I couldn’t walk when I was born, and it’s because of the spectrum.”

Hm, probably not the case.

“I know how to read, so I’m really good at autism.”

I guess so?

We finished up by asking him how he felt now that he knows about autism. Turns out, he thinks it’s pretty cool.

“I think that having autism is great. Of course, what do you know?”

Not much, apparently.

“Do you like autism a lot?”

Yes, yes I do, in fact.

“Well, thank you!”

You’re quite welcome, little man, it’s been my pleasure.

When his aunt and cousins came over later in the day, he ran up to them and gleefully exclaimed, “guess what?!? I have autism!”

Let the celebrations begin.

And, as is his wont, Jack summed up autism in the most eloquent way possible. From the mouths of babes and all, words of wisdom:

“I think it (autism) helps me want to do lots of things. It’s great for the mind, because it can help you do lots of things.”

And finally:

“Some people (with autism) can’t talk – it’s not about your voice, it’s about your mind.”

I couldn’t have said it better myself.

 

voice mind 2

 

***********************************************************

Next up in this series – what Jack’s brothers have to say about autism.

 

 

 

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Dear Jack… You Have Autism.

Posted by on Jul 15, 2013 | 7 comments

Dear Jack… You Have Autism.

Dear Jack,

There is something your Daddy and I have wanted to tell you for a long time. Something that we weren’t sure how to bring up, or when. Something that has the potential to change the way you live your life.

Jack, you have autism.

You are my firstborn son, my love, my everything. I have adored you since long before I knew you. I waited to meet you my entire life, and when I met your Daddy, he was just as excited. We knew from the very first time we saw you on the ultrasound monitor that your name would be Jack. We didn’t even think twice, we just knew immediately, right there and then. Jack.

You know that you came into this world a bit early, earlier than your brothers. I spent a long time in the hospital waiting for you, waiting for the day it would be ok for you to come earthside. You were early, but very healthy. Daddy and I held you and couldn’t believe how beautiful you were. You are. Perfect little nose, perfect blonde hair, perfect little fingers and toes.

Perfect.

You came home and made us a family. You are the first, the oldest. Your three younger brothers love you, learn from you, and adore you.

We have known you have autism since you were three years old. Actually, that’s when the doctors told us officially. We’ve known you were special since before you turned two. You couldn’t speak, but you knew things. You were incredibly smart. I have no doubt you understood everything.

Knowing you have autism didn’t really change a lot for us. If anything, it made everything easier. You were able to get the support you needed, and some amazing people came into our lives because of it. Miss Amanda helped you learn how to talk and play. Aki and Jane helped you learn how to climb and swing and do small puzzles. Miss Amelia, Miss Deborah, Miss Shelby and Miss Jesse gently guided you into school, with lots of love and joy for learning. And Miss Shirin, who made sure that someone was always at your side (Eric, Charlie, Geoff, and Christine), teaching you how to cope when things get to be too much, how to focus your attention when necessary, how to be safe, and how to explore and enjoy the world around you with freedom.

They all gave you what every child wants and needs. Freedom.

When we moved to Canada, you started “real” school. Kindergarten. Grade One. Grade Two. This fall you’ll be going into Grade Three, which I can barely believe. Not only are you thriving educationally, you’re speaking French while you do it. Even more amazing people have guided you to this point: Mme Riel, Mme MacIntyre, Mme Dowes, and Mme Okeyere have taught you as they taught every other child in their classes, and gave you every respect and inspiration you deserve. Mr. Yaniv and Mr. Perk have guided you from behind the scenes, putting you on the right path and making certain everyone charged with your care is trained properly and know how to support you in the best way possible. And Mme W in Kindergarten, and Mme S ever since, have been by your side every single day.

Because of this team of professionals, this group of people who both want you to succeed and love you dearly, you are the boy who stands before me today. Jacktor The Tractor. JackJack. Jack.

A child who once could not speak at all, who now can not only speak English on a high school level, but can speak French as well.

A child who had such low upper body tone as a toddler that he could barely climb a play structure, who has now mastered not only the monkey bars, but also taught himself how to ride a bicycle (without training wheels).

A child who had no concept of how to play with his toys or colour or use his imagination, yet has now filled my home with extensive drawings of whatever the popular subject is this week, expansive and intricate art projects he’s built, and fantastic books he’s written about wild adventures and alternate universes.

Autism is not a bad thing, it’s just a thing.

Autism is why you only had four words when most other kids your age were chatting away. Autism is the reason you don’t like fireworks, or big crowds of people. Autism is why you get to walk around in the halls at school when being in class just gets to be too much.

It’s why you run through the house in loops, and don’t always listen when someone is talking to you. It’s why I ask you to look into my eyes, so I know for sure that you’re hearing me. It’s why the loud things and the buzzing things and the light things and the random things make you stressed a lot more than other people.

Autism is why you always went to special gyms and preschools and your brothers didn’t. It’s why we went into Vancouver so many times to see the doctors at the place with all of the toys, even though you weren’t sure exactly why we were there.

But Jack, there is something incredibly important for you to understand about all of this. Autism is the reason for a lot of stress in your life, but it is also responsible for you being “you.”

Autism is the reason you could write your name and build intricate structures at a very young age. Autism is the reason you were able to learn how to read in English, how to ride a bike, how to tie your own shoes, and any number of other tasks you took it upon yourself to learn. To teach yourself.

Autism is why you see things a little bit differently than your brothers. And your friends. And most people, for that matter. People look at things and see them for what they are on the surface, you want to know what’s inside. You yearn to dissect and examine everything that interests you, and a whole lot of things interest you.

It’s the reason your younger brothers can read, write, do math, name all of the planets and discuss weather anomalies and scientific principles far beyond their years. Because you have taught them. Because you are curious and thirst for knowledge, and want to share it.

Because you have autism.

And that’s why we’ve waited. We don’t want you to change anything. Not the way you live, the way you think, the way you see the world. Nothing has changed for us, and nothing should change for you.

I know now you will want to know every single thing there is to know about autism, because that’s what you do. In your investigations, you are bound to read some not-so-positive things about autism, about the autism spectrum. There are people out there who believe that autism comes from lots of different sources, that believe people with autism need to be “cured,” that want to eradicate autism completely.

You will make up your own mind about all of these things as you grow and experience life as a person with autism. Our job as your parents is to love and support you on your journey to adulthood, just like your brothers. We have given, and will continue to give you, every advantage we can to make it as stress-free as possible.

Sometimes, though, the stress with break through. You may get frustrated with other people, difficult situations, and even yourself. But I need you to understand the most important thing of all.

You are special. You are Jack. You are not autism.

Autism is not who you are, or what you are. Autism is just another part of you, like your thick, curly hair, your long legs, and your blue eyes. Autism did not determine your personality, and it cannot determine your limits. Only you can decide those things. You have the power to be whomever you want in this world, and whatever kind of person you’d like to be.

My wish for you is that you remain loving and curious. That you have the tools you need to cope when things get difficult, and not let the difficulties stop you. Please don’t ever stop learning.

Jack, I want you to show the world that you don’t live in spite of autism, or because of it. You are amazing because you are Jack.

With all of the love in the world,

Mama

autism is amazing

 

 

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Autism by Any Other Name…

Posted by on Mar 12, 2012 | 11 comments

Autism by Any Other Name…

What’s in a label?  I mean, really?  I know the whole “a rose by any other name…” spiel, but I also know that sometimes labels are there for a reason.  Sometimes the label helps you to understand what’s inside the package a little better.

It’s been four and a half years since we first had Jack assessed by Early Intervention in Los Angeles and we took the first steps on this journey of a lifetime together.  It’s been three and a half years since he was formally diagnosed with autism spectrum disorder, autism or ASD for short.

At the time, I had mixed feelings about my child being “labeled”.  I knew that with a formal diagnosis of autism the doors of opportunity would magically open for Jack, and he would be supported both at school and socially, at least through early adulthood.  I also knew that for some people in his life, a label served to “explain” Jack a little bit, and made it easier to understand him.

On the flip side, labeling a child for life can be a harsh thing.  Jack will forever carry a stamp on his forehead, or so I thought at the time, that will cause people to judge my child before he has a chance to show his true self.  This reality shattered me and broke me to my very core.  No parent wants their child to suffer, especially for something he can’t change.

I had no idea how we, he, would reconcile these two very different aspects of the one little word, autism.

What I, we, discovered, is a whole new world just waiting for us with open arms.  People who helped us see the beauty in the chaos, the light in the sometimes profound darkness.  Therapists, teachers, professionals, parent, people who have been walking the same path for a while, and those who have just begun.  People who understood the strangeness that is our reality now, and don’t think it’s actually that strange.  People who cheer things others take for granted.  People who laugh with us at the absurdity of it all.   We found community.

Launching this site definitely helped me.  I started it with the intention of sharing my deliriously funny child with the world, and got so very much more in return.  The inkling of an idea I had in the beginning was reinforced in spades: autism is a gift.  For Jack, for me, for our family.

So, four and a half years on, we are at peace.  Autism is still quite often a daily struggle, but it’s also an integral part of our family.  There are so many experiences and people and perspectives we might never have been exposed to had autism never entered our lives.  I have said it many times before, and I will say it again now: I will go to the ends of the earth to alleviate the things about autism that are painful, hard and stressful for Jack, but I will not wish for him to be “normal”. Jack is the person he is because of autism, and he is beautiful.

A leap into the future.

We are at peace.  Well, we were.  Not now.

We moved to Canada a year and a half ago, and we love it here.  The children are happy, mama and daddy are happy, the family is happy.  It was a good move.

When we got here, Jack was immediately taken in by his new school, and once they assessed his situation, he was given full support.  He transferred to the school near our home this year (he had been on the wait list), and they welcomed him with open arms and a full-time SEA (special education assistant).  He is in the grade one French Immersion program and doing really well.  He’s had no support outside of school, though, because that requires funding from the British Columbia provincial government.  In order to get that, Jack needed to be diagnosed again by a Canadian doctor.  Not a problem, we thought, the only issue is a possible year-long wait list.

We had no idea the wait would be the least of our problems.

The clinic in our area that does the autism assessments contacted us a couple of weeks ago and I began a conversation with a wonderful caseworker.  She requested copies of many of Jack’s reports, IEP’s, etc., so I started scanning and emailing forms.  I think I sent well over a hundred pages out of my four-inch-thick “big book of Jack”, which includes every report, letter, IEP and piece of paper concerning autism that I’ve collected since we started all of this back in August of 2007.

In the interim, I was hearing horror stories from other local parents about how their children had been misdiagnosed with ADHD or not diagnosed at all for years.  Parents who finally, in desperation, paid thousands of dollars out of pocket to hire private clinics to take a closer look at their child and give a more accurate diagnosis.

I was nervous, but held firm to the belief that we’d be fine.  After all, Jack was formally diagnosed by not just one, but two doctors, completely independent of one another.  He has had years of occupational therapy and speech therapy, spent three years in collaborative preschools with special education teachers, had a year of in-home ABA therapy, and has always had a full-time support person in school (Behavioral Interventionist in the US, SEA in Canada).  He has been supported by the Lanterman Regional Center, Working With Autism (for both BI and ABA support), several independent occupational therapy centers, and the Los Angeles United School District (LAUSD). No less than 22 full-time professionals in the last four years have worked with and for Jack.

Every one of these people have and continue to support Jack (including several in Los Angeles, who I consider to be his “team”, and I consult before any big decisions, like putting him into French Immersion).  My husband and I have worked hard.  Jack has, and does work hard.  It’s an ongoing job, and it’s paying off.

Evidently, too well.

The wonderful woman I was in contact with at the clinic here in BC thought of us when a cancellation came up last week, and we scrambled and made the appointment, mere hours after she called.  It was a simple assessment, just another ADOS.  Jack didn’t have school that day due to a teachers’ strike, and he was excited to go play games and work puzzles.  He was engaged.

The doctor’s verdict shouldn’t have shocked me, but it did. She said he “barely met her parameters” for autism, and she was more inclined toward PDD. My heart sank, tears welled in my eyes.

In California, as with many of the United States, PDD does not count as “real” autism.  Close, but no cigar.

All I could think was that all the years of hard work led us to this.  There is no cure for autism, but I guess if you’re close enough to “pass”, you can fall off the spectrum and get shut out of the community.

Both the doctor and caseworker were very quick to assure me that in Canada, PDD and ASD are treated the same.  They both receive the same funding and the same designation from the government. There was still some discussion as to whether they would push for a speech evaluation and more thorough psych exam, but for the moment at least, I was assuaged.

I slept on it for a few days, and became less so.  I realized that I was not, in fact ok with this new diagnosis.  I am very far from ok with it.  My child has autism, not PDD.  I know this.  Everyone who knows Jack knows this.  How can all of the people who have worked so closely with him for so long be wrong? I thought of all the things I didn’t mention in my part of the interview, all the obstacles he’s overcome, all of the “bad” things we’ve dealt with.  I wondered if perhaps I had gotten too cocky and Jack had had too “good” a day.  A perfect storm of neurotypicality, if you will.

After a sleepless night hashing it over in my mind, I sent the caseworker an email asking, politely, that they pursue the additional assessments.  I explained that I understand their position, but in my mind, autism just doesn’t disappear.  I don’t know how much influence I had in the decision, but within a day I got the call that they would, in fact, be going ahead with the evaluations.

I felt some relief, yet a nagging voice in my brain just wouldn’t quit. “I’m not ok,” it said. “I need it to be autism.”

Why?  Why am I so afraid of losing autism?  Why am I afraid of losing what is essentially just a label?  Jack will still be the same person he’s always been, whether his file says “autism” or “PDD” or “purple-winged boogie monster”.  He will still be my hilarious, socially-challenged but eternally endearing, beautiful boy.  Jack will not change without autism.

Or will he? In my mind, he, we, will lose identity.  Community.  Future. When Jack was first diagnosed, I took a deep breath and told myself “here we go, this is his/our life now”.  I never dreamed that would change.  Sure, I expected and hoped for him to adapt and learn and in some ways acclimate, but I never thought for a second the autism would go away.  That just doesn’t happen.

And there it was.  I need autism now.  It’s a part of me. It’s who Jack is, it’s who I am as Jack’s mama, it’s who we are as a family.  Autism joined our family the same day Jack did, and it’ll be with us just as long.

And I suppose if the official diagnosis stands at PDD, not much will change.  Life as we know it will roll on, and Jack will continue to be hilarious and socially-challenged and endearing. And I will stubbornly cling to the name of this website.

In the end, it’s just another stop on our journey together.  Autism really is a trip.

The family that autism built.

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**UPDATE**

I had a few more thoughts on this, so make sure you read the follow-up here.

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