the second beginning

The first post is the hardest one to write. I have so many things in my head I want to get "down on paper", but starting is the hardest part. Here goes...

xoxomf

I'm a married father in his late 40s with 3 autistic children (8, 10, and 13) and a vasectomy. Each one of my children has their own flavor of autism. The name of this site is xoxomf - kiss hug kiss hug motherfucker - because loving and raising kids is hard. When you add autism to the mix, it becomes very hard. Very hard indeed. More marriages break apart because of these unique challenges than typical marriages. Many people (way more than you'd think), particularly single parents, actually commit suicide or murder / suicide to escape it... especially when their kids age out of services and they find themselves constantly being assaulted by their 24 year old 6'2" 250lbs built-like-a-brick-shit-house "child" who's still non-verbal and goes from 0 to 100 with flying fists the millisecond something sets them off. This is serious shit, and I'm going to talk about all of it.

Entries here will cover difficulties, coping strategies, depths of depression, the best ways I've found to cultivate joy, existential crises (yes that's plural), and basically everything I've gone through. I don't want and won't be speaking for my wife or kids, this is purely my perspective. To be honest, at this point I don't even know if I'll make any of this public. If you're reading this, then I guess I ultimately chose to. Take everything here with a giant boulder of salt.

So.. who am I writing this for? Well, for me first and foremost, just to get it all out of my head. Second, I'm writing it for other parents of autistic kids. There are groups online of various stripes, but posts from parents there are usually just blunt thrusts into the abyss made by exhausted people, typically at the end of their rope. I do not find it all that helpful to my own mental health engaging with those groups. Finally I'm writing this so other people can get just a small glimpse into the real shit - what it's actually like for at least one family with autistic children.

While so many behavioral traits of autism are common, it is a spectrum because "everyone is different". Yes, just like neurotypicals, everyone with autism is indeed different. I will try to present whatever this website is as a story of my own experiences, there will inevitably be times I make blanket statements or make presumptions about experiences which will have some readers yelling in their heads "well not my kid" or "that's not how it happened for me". Just remember, like the rest of us, I'm trying my best. The goal is to present my story. Many parts will be familiar, maybe even identical. Other parts will not. "C'est la vie"

the second beginning

We had our first kid and all the new parent jitters and neurotic obsessing over every little thing were par for the course. You want to know your baby is developing as they should, so you track the percentiles and you check the milestones as they grow and develop. You follow along as they start to show signs of "coming online". They start to walk and even start saying words. You say their name and you can see they respond in some way. They start pointing out letters and numbers, saying them as they do. They are repeating the words you say. They may even begin to understand some of the words you're saying. Then, in a blink of an eye, it all goes away.

When autism manifests, it steals all that progress in a matter of days or a few short weeks. Suddenly, they no longer say any words. They don't point to letters or numbers. Random noises start to become the only verbal utterances you hear from them. They don't respond anymore when you call their name. The fragile Etch-a-Sketch of a mind you've watched slowly form over the first two years of life gets radically shaken by the industrial grade brain jackhammer that is autism. What you are left with is a kind of second beginning, and a long slow road ahead.

elongated development

What I noticed about our kids' developmental progress is that it gets smeared out.. elongated.. stretched like a piece of saltwater taffy. If a neurotypical kid is scribbling by 1 year old, forming shapes by 2, drawing proper shapes by 3, and making stick figures and advanced shapes by 4.. then our kids would progress normally until around 2 years old, then they lose it all, then drawing scribbles might last not 1 year but 3.. accounting for 2 years of lost progress, they are now scribbling until they are 6 years old.. then getting to basic shapes may take another 3 years.. now they are 9 years old with same progress and capabilities of a typical 2 year old. It seems to go this way for just about every phase of learning and development.

focus on progress

It was always painful to compare our children's progress to other kids half their age and still see they come up short. This stark difference was even more apparent when they mixed with other kids of various ages at events, parks, etc. A dark humor mantra that developed in my head was "deep depression is always just a comparison away!" as it was so easy to just think "my kid will never do x" and believe they had no future. Eventually I had to wrench myself away from those thoughts, and I did that by focusing on progress. As long as there was progress being made, however slowly it might be going, then hope was not lost. This carries me through to this day.

let go of expectations

For each of our kids, we chose not to know the gender / sex (whatever it's called now) ahead of time. We wanted to be surprised. Oh the irony. With the first born, the moment I held them in my arms I felt a titantic shift - the direction my life that was laid out in my head instantly changed. What I thought my life would be was blown away like tiny grains of sand across the dunes, and a new mirage laid itself out before me... a shimmering pool of potential. Images of things my child would do filled my head, like a life which wasn't mine that was flashing before my eyes.

This same feeling came to me after autism became a reality for my family. Only this time, the sands shifted much more slowly, softly giving way as the march of time kept up its unceasing tempo. My stable footsteps on the solid ground between each milestone began to feel sluggish, then difficult... like trudging through quicksand. I kept looking for a rock to stand on, but the sands just kept shifting. Over time, I came to understand that having any expectations at all became futile, and the existential dread of simply not knowing what to expect slowly set in. Some people like to quote "comparison is the thief of joy", and that definitely rings true, however I found it is act of enduring constantly unfulfilled expectation that turns simple lack of joy into full blown "dark place" depression. Letting go of your preconceived expectations and being absolutely open and ready, both mentally and emotionally, to have new completely unexpected experiences, even horrific ones, especially the horrific ones - this will be the key to avoiding pitfalls like the aforementioned divorce and suicide.

it's not all bad

Being a parent to an autistic kid, let alone 3, is difficult and challenging in ways parents of neurotypical kids could never imagine. Complaints about their kids will make you laugh, cry, and probably even enrage you at times. That said, it's not all bad. The key thing is to try and keep this in mind at all times; Joy cannot be given. Joy cannot be extracted. Joy only exists in your own mind. Joy is therefor created by you and you alone. I'm still trying to learn and apply this.

There is a scene in the 1989 classic movie Parenthood, which I think is apt;