The truth is in
The proof is when
You hear your heart start asking,
“What’s my motivation?”~ The Newsboys, Shine
That’s it. What’s your motivation for putting your child into therapy? What’s your motivation for changing a light bulb to blue? What’s your motivation for listening to people who push for you to wish your child had never been born?
You may think Autism $peaks is a great resource. They’re researching Autism, so they must be okay. They are really researching ways to remove Autism from the gene pool. Autism $peaks does not care about Autistics. They care about money. Which many people seem happy to freely give to an organization that devotes less than 4% of your donation to helping families. The rest is spent telling you that your loved one is a burden that you shouldn’t have to bear.
If that is truly your motivation, then follow the blue. If your loved one is only lovable if they are “Autism-free” then perhaps you need to really look at yourself and why you feel that way. The more you follow the blue, the more likely you are to miss the love offered to you.
That is the tragedy here. It’s not Autism. It’s a group of people who think Autism should be seen entirely as a burden. Listen to Autistic voices instead of voices that want you to believe disability defines a person.
One of the most common phrases I hear this time of year is that “Autistics need to speak up.” If you want to be heard, speak louder. We are speaking. We can be found at the United Nations. We can be found on social media. We can be found on main-stream media, although a certain organization drowns out our voices with their expensive, slick campaign. The campaign that so many people give to and follow while at the same time proclaiming that Autistics don’t speak.
We do speak. We talk to you verbally. We talk to you using assistive technology. We talk to you through behavior when our words escape us. We are talking loudly. We wish you would listen as closely as you listen to A$.
Gotcha! I bet you were thinking it’s another blog on words. Nope. I mean this literally. In a nice way of course.
I have some texture sensitivities. Certain foods just make me gag. I know some people like smooth. Others like crunchy. It really depends on what works for you. One of the “newer” therapies is called “feeding therapy” where a therapist works with you to desensitize and add more variety to your diet. I can honestly say that particular therapy rubs me wrong. Years ago, you got feeding therapy after having a stroke or some other major event that impaired your swallowing. Now, I just think of a kid who already has so little control over their lives being forced to learn to eat “acceptable foods.”
So, teach your kiddo some manners like spitting into a napkin, not saying “ew, gross” or some other words. Teach them that trying a new food doesn’t make it part of the menu of they don’t like it. I know it can be maddening when your child only chooses 5 foods. You’ll both make it…I promise. Those 5 choices will change and most likely expand. You may not even notice the changes. Give yourself or your loved one some choice in what they eat. You might just discover it was really a disagreement about control and not actual food avoidance.
I have a certain level of disability. You can only see a very small portion of everything I have going on. I’m one of the people in possession of a handicapped parking permit, yet you can’t see why. Yes, I’ve had people tell me off for not being disabled. Yes, I usually ignore them. It’s just easier to walk on.
So, yes, I can. I can walk….just not very fast or far. I can work….just not more than about four hours a day. I can take care of my basic care needs. But, I require assistance with my medical needs. Sometimes, I need help with my Autism needs. Yes, I can.
When medical professionals determine “I can’t” without talking with me, it is frustrating. I need information presented orally and in writing. It’s really not that big of a deal, is it? I’m sure I am not the only person who learns better when the information isn’t just spoken to them. But, some people take that as “I can’t.”
Don’t assume my needs based upon your experience. No two people are the same. I am different because of my neurology. I am not less.
A double edged sword. I mean, who doesn’t want to inspire others? It’s a normal feeling. It’s kind of cool to know others think highly of you. Yep, inspiration is a warm fuzzy.
Then, there’s “inspiration porn.” That’s the idealization of disabled people and their accomplishments to make yourself feel good. Think about this.
That fish swims well.
That fish swims well, for a fish.
Sentence one just states a fact. No qualifiers, just a statement. Sentence two has a qualifier that objectifies the fish. Sentence one is inspiration. Sentence two is inspiration porn.
Anytime you have a “yes, but” in a sentence, you are objectifying the subject of the sentence. You are pointing out that the subject should be seen differently and judged by another standard.
Think about this for a bit. Think about how it applies to people. Are you judging with your words? Retrain yourself to avoid “yes, but” sentences. Think before you write or speak.
Once you realize the way “yes, but” affects perspective, you can begin to understand why inspiration porn is hurtful.
Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.~ Harvey Fierstein
Silence is perhaps one of the most misunderstood states. I can be silent because I’m angry. I can be silent because I’m thinking. I can be silent because, well, I have no words.
Don’t mistake my silence for acquiescence. I’m thinking. I’m feeling. I’m trying to formulate a response. It may seem like I’m ignoring you. I might be 🙂
Silence is time. Time to come up with a response. Time to consider an appropriate response. Time to decide if I need to respond. Time I need to make sure I don’t blurt out something. Precious time.
Be patient. Give me time. I’ll let you know when I have something to say. Or, not.
Nobody likes being scammed. Knowing that someone has told you a story that is not entirely true in order to convince you to give them money leaves us all feeling angry and insulted. Rightly so. We …
Stressed out, running late, racing down the interstate
Spilled hot coffee, down the front of my jeans
It’s work, work, pay the rent, money and my time’s spent
Not a minute left for me to be me~ Kenny Chesney, Live a Little
Today, Eldest turns 23. Three months ago, she left home for a job. We expected this since becoming employed is the end goal of attending college. Still, it’s a bit quiet around here.
Now she’s building her own life in a little town in the middle of nowhere USA. She works the late shift, comes home, sleeps, trains her dog, and does it over again. In between there are grocery runs and a few other errands. She’s active on social media and is working on keeping her language skills up in hopes of landing a better job. And she reads. Lots.
Today I hope she will be able to take a few minutes for herself. Just do nothing. I’m not sure the dog will cooperate, so he may need to be included. Take a small piece of time and just breathe. Think about how much you’ve done and not worry about how much is left to do. Be proud of everything you’ve accomplished. Try not to get wrapped up in things so you can’t enjoy those few moments.
Bask. Yes, bask. Ten years ago you were getting ready to start high school. Blink and here you are. Twenty-three years ago you didn’t even know your name. It sure goes fast when you look at how time moves. I love every minute of being your Mom.
Here’s to you. To new adventures. To taking a moment to be amazed by yourself. To savor all that has passed. To dream about what is to come. To take a few minutes away from rushing around and just breathe.
And then, eat chocolate. Love you!
April 2nd. Wear blue. Change a light bulb. Give money. Raise money at a walk for an organization that doesn’t give a rat’s behind about Autistics. Go you!
Seriously. If I ask 100 people if they know the word “Autism,” 99 will say yes. There’s your awareness. I ask the same 100 people what Autism “is” and 30 of them will know. Ask them if they know someone with Autism and 10 will raise their hands.
Therein lies the problem. You are aware of Autism. Cool. Now what? You know the name of a neurological condition. Good on you.
Now, try something new. You are reading my blog, so you sort of know someone with Autism. Feel free to post a comment or ask me a question. Too much? Try some of the following from Giraffe Party:
Here’s a load of resources for you…
– What is autism? http://autisticadvocacy.org/about-autism/
– Why we don’t support Autism Speaks: http://autisticadvocacy.org/…/2013-joint-letter-to-the-spo…/
– Boycott Autism Speaks: http://www.boycottautismspeaks.com/
– Why you shouldn’t “Light It Up Blue” this month: http://thefamilyvoyage.blogspot.com/…/please-dont-light-up-…
– Instead, let’s Tone It Down Taupe! http://timetolisten.blogspot.com/…/tone-it-down-taupe-this-…
– What good is autism awareness? https://ollibean.com/…/…/01/good-autism-awareness-do-doesnt/
– Acceptance Not Awareness: http://imapartygiraffe.com/on-autism-awareness-month/
I’m not blue. I’m Autistic. I’m not a puzzle piece. I’m a person. You won’t find me supporting A$….ever. Why? Because I’m not a disease to be cured. I’m not a voice to be silenced. I see the world a bit differently. And that is just fine. Why are you hearing my voice now? Because too many people think they are helping Autistics by supporting a charity that despises Autistics.
Give locally to programs that support families. Do your research. Is your money really going to do what you expect? Or did you just help pay for someone to present a “speech” about an epidemic that doesn’t exist. I’ve seen parts of the organization’s budget where they spend more money on catering than they do on helping Autistics. Yep, you just paid for a sandwich. Feels good, right?