The letter I wish I had read when my children were diagnosed with Autism

This article was moved to michellesuttonwrites.com

http://michellesuttonwrites.com/2015/11/16/the-letter-i-wish-i-had-read-when-my-children-were-diagnosed-with-autism/

Grieving Autism Accepting Autism

I was asked recently if I am worried BabyR will be Autistic. The question stumped me for a minute. I felt like I was expected to say yes. I wanted to say no. In reality my answer would have to be "it depends".

When MissG was diagnosed I grieved. I sought a diagnosis for MissG because of problems she was having. Problems with communicating and in social situations. Problems due to sensory overload. Problems caused by my expectations of how she should behave.

The reality is my grief was based on my own false expectations. On what I thought society wanted from me and my child. On what I thought I was losing, based on what media and health professionals told me about Autism.

But I now realise that I didn't know anything about Autism. About its creativity. Its persistence. Its resilience. Its beauty.

I am not worried that my child may never speak out loud. I am not worried that he might have some challenging behaviours. I am not worried that he may have difficulty processing sensory information. We have 2 Autistic children already and we know how to support them. What we don't know yet, we will learn if and when we need to. The fact is that parenting any child, Autistic or not, presents its own set of challenges and requires learning new skills and ways of thinking. I am not worried about facing those challenges.

I am only worried that if he is Autistic he will face bullying, discrimination and stigma.... that people will not accept him for who he is.  That he could grow up knowing that in some peoples eyes he will always be less.... broken.... inferior.

But not to me. To me he will always be just fine as he is. His neurology does not make any difference to me. I love him. I will not be disappointed if he is Autistic. Sure, it would mean another intense parenting journey. Sure, it would mean more work finding the right supports for him. Sure, it would mean more learning. But why would that be a problem? He is my son. I would do anything for him. Just as I would for any of my children. Just as you would for yours.

I am not the only parent of Autistic children who feels this way.

"We cannot afford for the focus of Autism be about parental grief.   Our anger and our sadness and our grief need to be directed at the targets which are worthy of it.  Those targets should be the ways that Autistic people are disabled by their environments.  And we need to attack those targets with ferocity.  To disable the environments which keep Autistic people from thriving."          

from love explosions

"When I try to imagine how my child feels about life, I take my childhood and try to imagine my life minus those experiences. But that's a fallacy. Anytime I try to subtract my experiences, I will feel a sense of loss. That same sadness happens when I imagine what I think is a "normal" childhood, an ideal childhood, that comes with a list of all the experiences a child needs for a great childhood. Karate, Valentines, kindergarten, music lessons, ballet, team sports, schoolmates, formal dances, first car, spring break, college visits. Any missed experience means that I have to cross that item off his list. A missed experience means a less-than- ideal childhood. Always. For any child. It's a flawed paradigm.

This paradigm is the same one that causes us pain when we think certain children with certain qualities are "Normal" and any difference is "Not Normal."  It can only set us and an entire group of children up for isolation.

Children with a disability do not have a life minus. They have a life period. It's their life. It's not some other child's life, the parent's life, or their peers' life. It's their life.

A complete childhood has nothing to do with specific experiences. A complete childhood does have certain qualities: connectedness, optimism, playfulness, a passion for things that interest them, a feeling of proficiency at things they want to do, and a feeling of being loved wholeheartedly for who they are right now.  That list is the one that matters."  

from Mama Be Good

Autistic adults have spoken out about grieving Autism too.

"You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."

from 'Don't Mourn for Us' an article by Jim Sinclair 

Look at this picture. How could anyone honestly ask me if I am worried this baby will be Autistic like his older brother? Look at them! How could I be worried when my Autistic son is a strong, intelligent, persistent, brave, tenacious, caring, funny, generous and thoughtful young man who has big dreams and expectations for his life?

Why would I worry about having 2 sons like that?

The grief ambush

I was reading a conversation thread in a group I'm in on Facebook, where people were sharing what they'd done on the weekend. Most of the comments were about how they'd been with family celebrating birthdays, or that they'd had a surprise visitor, or spontaneously gone on an outing. And they all said they'd had a great time, or enjoyed themselves.

And I realised something I hadn't thought about before.

I haven't truly enjoyed a family get together, a surprise visitor or a spontaneous outing for ..... ages. I mean, I've been in those situations and there have been moments of pleasure, or laughter, or contentment. But I am always super alert through the whole event- watching for cues that I need to intervene to support someone or make a quick exit- which is tiring and detracts from the experience because I am not fully focussed on the conversations in the room or the people there. I always leave feeling drained and tired. And sometimes wondering if it is worth the effort.

And realising this made me sad.

A little bit of the sadness was for myself, because I miss enjoying social situations.

A lot of the sadness was for my two ASD kids, because I started to imagine what their experience of life is like if their reaction to social situations has this effect on me. How much worse must it be from their perspective? I hate to think! I know a little bit of the theory of what it is like for them from talking with psychologists and adults with ASD. I don't really want to know exactly what it is like for them, honestly. I think it would be too distressing to really know. Whatever their experience is, they get to live with it for the rest of their lives. I can help them learn strategies to help them cope, with the help of the right people, but I can never make it completely better for them- it will always be coping.

I'm not sure yet what to do with this new realisation. It is making me uncomfortable. Sad. A bit angry. Mostly sad.

......many reasons to be thankful

I can feel a bit of the familiar recurring grief cycle creeping up on me. Tugging at me to sit with it for a while again, and feel sorry for myself. And this time, because I feel it coming, instead of it jumping up and grabbing me, I feel reluctant to give in. I don't want to grieve right now. I resent that tugging. I dislike the way that grief lurks in the shadows of my mind and waits for something as simple as a conversation about enjoying life to ambush me and cause me to stop everything to deal with it.

Maybe naming it and telling you about it will help me to walk by it this time. Maybe acknowledging that it lurks there will help to push it into the background again, without me having to spend time fighting it.

See, I think that while it is probably true that I have real reason for this occasional grief, that I have so much more to be thankful for. And that is what I'd rather be thinking of.

Crying out loud

We have an expression- laughing out loud- that we use to explain that we really thought something was funny. It is such a popular expression that these days we abbreviate it- LOL- when using social media, to convey the idea that we thought that was funny. We do it face to face as well, we laugh out loud when something makes us happy.

"She is Autistic"

I talked a few posts ago about how it can be a real shock to receive a diagnosis for your child. I want to go into that a bit more. First some history.....

Diagnoses are like duck poo

A few things about me-

I love gardening.
I love not wearing shoes.
I love not wearing shoes especially when I can walk on long cool grass.
I used to have pet ducks.