Sunday, May 4, 2014

Guest Post: Life is Hard

This is a guest post by Myria, who does not have her own blog but may borrow mine at any time.

My daughter is going into kindergarten next year and I'm scared. I know that if you are a parent you can probably relate, regardless of your child's diagnosis. Specifically, to give a small sample -

I am worried because my daughter does not yet have a way to communicate everything she needs to say. I am worried that her sleep issues will keep her out of school, that seizure activity will be mistaken for purposeful misbehavior, that purposeful misbehavior will be mistaken for seizure activity, that she will become overwhelmed and not be able to participate. I am worried about her being objectified as either the sweet little disabled girl or the problem child. I am worried that her intelligence and competence will be dismissed if she can't jump through the school's academic hoops.

My daughter is not autistic, by the way. She has Patau Syndrome, which means she has an extra chunk of the thirteenth chromosome, but many of her challenges are shared by people with disabilities unrelated to hers - me, for example. I am autistic and she is not. We have some strengths and difficulties that are different, and some that are the same.
I took my worry about next year and did something productive with it - I went to an IEP training for parents of children with various disabilities. Going into a roomful of parents was daunting, both because it was a room full of people I didn't know and because as parents, we can and do get away with a tremendous amount of ableism. At this training though, I was pleasantly surprised. The atmosphere was positive and encouraging. I learned a lot of useful information that will help me with my daughter's IEP team. The speaker was fluent in presuming competence and so were the other parents.

Except for two.

They talked about how difficult life was with their son and how no matter how hard it is, you just got to accept that the child you dreamed about never existed, and you got to be the best parent you can be to this child no matter how hard it is life is so hard we're so disappointed we're soldiering on...
I've heard this before, of course I have. It's everywhere. When my daughter was newly diagnosed and her doctors would not speculate about her life expectancy (at four months old, she had already beat the odds they would have given her at birth), I was isolated in my terror, haunted by images of tiny coffins every time her breath faltered. I went online seeking connection and support, reading along on forums for parents of disabled children. Guess what I found? Autism parents. My mother was great, and for myself I had stuck to the autistic forums, feeling no need to go into the parent spaces, so I had almost no previous exposure to autism parents. I was shocked and wounded and struck with a deep anger. I clearly remember (can't forget) posts I read during that time.

"How can I feel connected to a child I can't hug?"
"How can I love a child who won't look me in the eye?"

 "It's like she's not even human sometimes."

How dare they. I was counting my baby's breaths and the seconds between them and how dare they. I was like the child they said wasn't human while I silently pleaded with all the universe that my baby's seizure would stop, that this wouldn't be the last day. Everything that has ever been used to hurt me, to discard my humanity, to shut me up so others could use me as they pleased, I read on those forums in posts written by parents. They couldn't love their children who were like me and I just wanted my baby to live.

I am disabled. My child is disabled. These are separate facts that cannot be separated in my person.
And back to the present day -

I am like the child that so disappointed the parents at that meeting. I sat there and didn't say anything because (like their child, like mine) sometimes I can't, and because a crowd of parents is not a safe place. And then all of the other parents, all of them, and the speaker too, gently turned the conversation around until it was at a place that affirmed the dignity of this child while addressing the parents' concerns. During the course of the conversation, the negative parents slowly adapted their language and affect to match the rest of the parents. Did it stick? Who knows, but it gave them a chance to see another way.
Support is important - but if your support network is poisonous, go elsewhere. If there is nowhere else in person, find people online who support you without dehumanizing your child. They are out there, I promise. 

1 Corinthians 15:33: Do not be misled: "bad company corrupts good character."

Myria lives in the Pacific Northwest where she attempts to keep her socks dry. She is autistic and lives in a neurodiverse household (including two cats who live with Siameseness)


Chickenpig said...

I have avoided talking with other parents for exactly this reason. Children do not exist to make us as parents feel loved, or validated, or to take care of our needs. I wanted to have children so I could pour love into them. It took my husband and me nearly 10 years to have children, and when I hear this total bullsh*t that parents need to "grieve the perfect child they didn't get" I want to smack them! My children are here, they are alive, they are wonderful...and there were so many odds against it going this way. It truly is a shame when people don't know how lucky they are. Maybe those people in your workshop will some day?

Unknown said...

"How I can love someone I can't even hug/look in the eye/whatever?"

Uh...same way you do a cat? Or a parrot? Or a horse? Or any other beloved animal that isn't a domestic canine?

Fun fact: Domestic canines are the ONLY animal species in the world that has nonverbal behavior even remotely close to behaviorally modern humans, and only because we selectively bred them for it. Not even our closest genetic relatives (chimpanzees) speak the same nonverbal language: that's why so many people who try to keep chimps as pets end up getting their faces bitten off. They made the mistake of looking it in the eye and smiling while baring their teeth, assuming that the chimp would see it as a friendly gesture the same way a dog or another H. s. sapiens would...only to a chimp, both of those behaviors look like a THREAT instead and are treated as such.

I've worked with lots of different animals, and lots of different people on all sorts of developmental spectrums (not just Autistic). You know how you love them and show affection? You watch. Observe. Ask what they would like you to do, what feels good to them or doesn't feel good. You adjust your own behavior to match their's.

Most creatures, and it seems most people on the ASD spectrum (including myself), and even most non-American, non-Autistic humans, do not find sustained eye contact or spontaneous hugs to be friendly or nice. The vast majority of people and animals still instinctively view those as threats. Humans are apex predators, and the only time an apex predators maintains that sort of eye contact with another individual is when they are either trying to assert their dominance, or about to pounce and tear the individual to shreds. Not even remotely a "friendly" gesture at all!

It's really not that hard to learn how to adjust one's displays of affection to find a common middle ground between two individuals, regardless of how their brains are wired. I don't like forward-facing hugs, but side-hugs (across the shoulders) are okay. So is the "Headbutt of Love" (called "bunting" when cats do it). I might not like to constantly cuddle next to someone, but I will occasionally lean over, rest my head on their shoulder for a moment to remind them I'm there and I care about them, and then go back to my spot.

I really don't get the obsession some people have with maintaining eye contact and spontaneous hugs, but I also grew up with cats since the day I was born. I learned to "speak Cat" before I learned how to "speak Human," so perhaps my idea of what sort of behaviors make sense and what doesn't is a bit skewed.

Fun fact: If you want to "smile" at a cat, turn your face slightly to the side and try to blink very slowly, while keeping the rest of your face and body as relaxed as possible. If a cat "slow-blinks" back at you, it means the feeling as mutual and it's okay to introduce your scent to them and get some cuddle time in. :)

Maria T PhD said...

First, let me say that I admire your candidness. As the mom of an autistic who was non-verbal until he was 6, I found I was the one doing the learning! I learned a new way of being through my son, and for that, I am eternally grateful. I learned to see the preciousness of every moment, and the importance of every milestone, but I also learned there was a whole, new world to explore with my son! Through his eyes, I learned how to see sounds, how to hear color. I learned how to taste the smell of steak, or feel the brightness of a morning. There are so many ways to experience the world, and the NT world limits itself. Autism was a gift from God to help us become more like HIM.

Each child, each new life from the moment of conception changes this world. We have to have the courage to be changed. You are a brilliant example of how change can impact humanity in a positive way. Through your struggles, and the struggles of your child, the delightful experience of wonder and appreciation can be found in a world that currently takes far too much for granted.

God made you and your child to do a very special job, to perform a very important task. Have courage and rejoice. This is the gift you give to this world, so that we can all be changed for the better.

I attend a grad school who uses the mission statement, "Learning what it means to be human". Thank you for sharing your experience today. It has helped me learn a little more about what it means to be human. You are a special blessing from God, as is your daughter. He will guide your path. Let's show the rest of the world what they are missing in our special kids!

Ettina said...

Yeah. Compared to the challenges of Patau Syndrome, those parents sounds like whiners. In fact, even on their own, they sound like whiners.

By the way, Myria, check out
Parents of Patau survivors usually seem to have a lot better sense of priorities than many parents of autistic kids.