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Autism: Unique is Awesome – Expressions of PosAutivity: #AutismPositivity2014

By Katrina Moody

Let’s Mold Different Perceptions of Autism and Autistic People

Autism Acceptance - because Different is Beautiful When Suzanne Wright penned her opinion piece for Autism Speaks last November, she didn’t inspire me to action, she didn’t help anyone understand the spectrum of Autism, she didn’t help autistic people (adults or children) feel valued and respected.

If you haven’t read the letter you can Google for it, I refuse to link to it. I know there are some parents who feel Autism Speaks really does speak for them and their experience in dealing with autism. But after seeing her words literally call my kids a tragedy, imply that they are missing, imply my kids and others who happen to be autistic are singlehandedly destroying their families, their parent’s marriages …

I was convinced that someone somewhere at that organization had lost touch with the Autism I know and love. And they don’t know the autistic folks I know – because the adults and children I know, including the ones I adore and love and call my own – they are amazing, beautiful and unique people.

Respect our Differences – even our Differences in Opinion

I found, over the weeks and months that followed, that I was increasingly sensitive to the negativity, the almost dehumanization, that seems to accompany some forms of autism awareness. Even some parents would use words to describe their experience that made me flinch. Maybe they were having a bad day, or they were just at a different point in their journey, but it made me increasingly uncomfortable.

Why was I so sensitive?

Not because their experience of feeling overwhelmed was wrong … it’s not about being right or wrong … it’s because the negativity was becoming harder for me to deal with. I actually wrote a friend in a panic wondering if something was wrong with me. I found myself upset by these posts because they seemed to be all I was reading.

Let me reiterate that there’s NOTHING wrong with parents venting and dealing with their experience in their own way. And sometimes I vent too …  BUT I follow a few rules …

Our Rules of Posting:

  1. I don’t share deeply personal things in a public forum  –  when I post something or ask for prayer I won’t always include all the details (sometimes even friends-only can end up letting a LOT of folks see that private post).
  2. If I share something about my husband or my kids publicly, I ask myself if they would mind having it out there. And if I can, I ask them (Bobby and Andy always have final veto power over what I publish, and while Logan isn’t able to verbalize his wants yet, my goal is to share with respect foremost in mind).
  3. I’m careful of details I put in groups, too – Facebook Groups (and most groups and forums online, honestly) come with three different levels — Open, Closed, and Secret. You must assume ANYONE can see something if you post it in an open group, and should assume your own risk in other groups. Trust the people in the group before you share to even a secret group, because once it’s out there, it’s out there.
  4. Ask yourself this: Do you need to vent? Could it hurt my child’s feelings? Could it embarrass them unduly?
  5. There’s more but that’s the biggest part of my own internal checklist (please leave your suggestions in the comments!). There are safe places to vent, and there are safe places to go if you need help, or if you are in crisis. Please reach out to me if you need to hook up with any of those or if you just need an ear…

Read more at: http://katscafe.org/autism-unique-awesome

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Filed under Autism Positivity 2014, Autism Positivity Flash Blog, Expressions of PosAutivity, Flash Blog Posts

My Boys with Autism are Awesome #AutismPositivity2013 Kat’s Cafe

This post was originally published by Katrina Moody on Kat’s Cafe, at http://katscafe.org/boys-with-autism-awesome and is reprinted here with permission from the author.

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Being Positive about Autism

Last year I was a part of the Autism Positivity project because I felt it was so important to present the positive side of autism. Our reality, yes, but not always so awful, autism is just a part of who my boys are, and my boys with autism are freakin’ awesome!

I’m not going to say it’s always rainbows and puppy dog tails, but my three guys have shown me, time and time again, how utterly awesome they really are, and this year’s Autism Positivity Project asked us to focus on that “Ausome” and share it around.

I couldn’t ask for a better reason to share a bit of our reality with you all. You see, it’s easy to be depressed, to feel overwhelmed, and to worry about the future when you have children with special needs. It doesn’t matter if your kids have autism or some other diagnosis, if you can’t see the positive in it and who those amazing kids are then it’s harder than ever to be the best parent you can be.

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Kat’s Cafe to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

This post was originally published at http://katscafe.org/2012/04/30/kats-cafe-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author.

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Kat’s Cafe to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

 

Autism Awareness in Action, A Positive Message about Autism for #AutismPositivity2012

Autism Positivity Flash Blog

It’s hard dealing with autism in the family, and I won’t lie, there are days when I am overwhelmed and out of sorts with too many questions asked repeatedly, (no desire to do) potty-training, too many doctors, and not enough time or therapy to do everything I want to for my children with autism.

But there is one thing I do know – I wouldn’t trade it for the world. As I struggled to write something to “I wish I didn’t have Aspergers” I realized that I was, in effect, writing potentially to one of my own kids, or to Jim.

And as that thought hit me, I realized the greatest fear I have for my boys, all of them, is that they’ll give up on the world around them, give up on themselves, give up on the hope of a future that seems so very far away today.

My message to “I wish I didn’t have Aspergers” is this: DON’T GIVE UP

Don’t Give Up Yourself to Autism

Everyone has a different idea about what autism (or aspergers) is, how to diagnose it, and whether one therapy works better than another, or one diet works better than another.

But at the end of the day, how you react to having autism isn’t found in how you treat your autism. Sometimes, in the ongoing struggle of every day trials, of things that don’t make sense and never will, or situations that are uncomfortable if not downright impossible to deal with, it’s easy to lose sight of the fact that YOU (or your child) is an individual FIRST. Autism is always second to who YOU are where it counts.

Don’t let the stigma of the diagnosis, the thoughts of the uninformed, or your own depression, let you lose sight of that — YOU matter. Not the diagnosis. Not the label. Not whether you make great progress or still struggle. YOU. Let yourself shine!

Don’t Give Up Hope

I don’t know if you are reading this as another parent, overwhelmed with the diagnosis of ASD, as a young adult (or mature one) new to the late diagnosis of Aspergers, or as any other person struggling to understand the diagnosis … hating it, even.

But you shouldn’t give up hope. Not hope for a cure – because I don’t believe in cures for things that aren’t a disease (autism is NOT a disease!) – but hope for something better.

Therapies, dietary intervention, new understanding of neurological and environmental causes – these are being discovered, used, and are successfully helping many with autism spectrum disorders every single day. With time, and effort, you can make the kind of progress you need to feel like you fit in with the rest of the world.

Or course, fitting in isn’t the same as being yourself, always. So please, don’t give up hope that YOU can be YOU, an extraordinary person with something magnificent to offer this world. Keep hoping that the rest of the world will see you as the unique and amazing person that you are.  Because I can guarantee you that others already do.

Don’t Give Up Your Determination

Over the years, a lot of doctors and therapists and teachers and friends, and yes, even family, have told us that our boys couldn’t succeed. That they wouldn’t be able to walk. To talk. To learn. To be … to be as amazing as they truly are. It was hard to hold on to our determination that our boys would NOT be the equivalent on any diagnosis or prognosis, but that they could always be more than some words on a page.

That determination wanes sometimes, when therapy doesn’t seem to make the progress we’d like … but it’s there.

Determination is what helps dry the tears and quiet the fears; it’s what is left behind when others try to dictate who you (or your kids) will be; it’s what you hold onto when you are tired and scared and lonely, when the world seems overwhelming and confusing. Determination will see you through the storms in your life; and help you embrace them and rise above them. Determination is your friend. Never give it up.

From a Mother to Another Parent

If you are the parent overwhelmed and unsure, caught up in too many of the negative things about dealing with autism … give yourself permission to be overwhelmed. Give yourself permission to be unsure, to be scared, to want to give up … but use that emotion.

If you can’t redirect those kinds of emotions, they will overtake you, and they will strip your determination from you. Your child needs you to give them that hope, that determination … the world is a scary place when they are trying to find their way as well. When you are overwhelmed, they are right there in the thick of it with you.

Learn to embrace the positive, the good, the unique, the loving, the innocent, the mischievous … and remember that these are part of your child as well. Help them to see that, and you will appreciate it too.

Don’t give up.

Persevere.

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