Yes, I Can

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.

Inspiration

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.

Silence

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.

World What?

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/

 

Autism Blogging

I follow a number of pages on social media where the parent is writing about their experience parenting an Autistic child. Yes, I worded it that way on purpose. Unless you, the parent, has Autism, you are not an “Autism Mom” or “Autism Dad.” The story isn’t about you if you are writing about your children.

I have been following one writer for almost 5 years now. I’ve read about the shock of diagnosis right through today where the child is doing things the parent was told would never happen. The parent is respectful, in my opinion, not posting pictures or stories that might be a problem for the child later on. Yes, it is a carefully edited story. I don’t feel “left out” because I’m not told about the hard days. I know they exist just like the hard moments before something amazing happens. There were times I wanted to comment about how every person is unique and “don’t stop believing” should be a theme song. I read how the writer thought A$ was a wonderful organization straight through the eye openers and now the grass-roots movements the writer is involved in. These movements are making a difference…tracker bracelets and software for elopers, accessible playgrounds, community forums, meetings with first responders and training school staff across the district. EDIT: You can find this blogger at Flappiness Is.

I just started reading another writer on the recommendation of a friend. A very different perspective. This writer posts 3-5 times a day…the good and the bad. There are other family factors at play, but I know far more about this family than I probably should. There are happy photos right alongside meltdown photos. The writer talks about how exhausting parenting Autistic children is. The writer frequently states “how damn hard” raising a child with disabilities is (the writer’s words, not mine). The writer has no time for themselves because they are always playing catch-up.

Two writers. One sharing the story and their personal growth. One over sharing and unable to enjoy life. One raising an Autistic child. One being an “Autism parent.” Can you see the difference?

One writer choosing to listen to the child. Choosing to recognize that Autism is a spectrum. Understanding that the child was diagnosed at one stage of the spectrum, yet seems to be moving on to places that were thought to be inaccessible. Listening to other voices and finding their own in support of their child.

Yes, it’s been five years of growth for the entire family of writer #1. Family life can be fulfilling or, like writer #2, you can let it suck you dry. I’m not saying there are no “hard parts” to life. I am saying your response to the hard parts impacts how you feel about your child.

As April begins, realize that the audience for A$ is writer #2. The fear, the struggling, the inability to enjoy your child. That’s what A$ stands for. YOU deserve a break instead of having to muck through this dreadful life. That is the message.

I chose writer #1. I chose to work with my children to help them become the best people they could be. I chose to help others see that my children are not diagnoses. They are not statistics. The world is a better place with my children in it. I’m a better person for walking beside them. There is no room in my world for A$.

 

April Blues

I have to admit, I am torn. April is almost upon us and it carries no significance to many. Easter has passed. Spring Break is a memory. The next big thing is Memorial Day and the end of school. Unless you are involved in Autism Advocacy.

Some people I am friends with on social media support Autism $peaks. The ads pop up telling me who likes the group. Then I wonder several things. Should I attempt education? Is it any of my business? They have a right to their beliefs, right?

Why do I boycott A$? I mean, they are internationally recognized, a non-profit and, well, they have a great PR team. What they publish makes sense in a way. If I were a young, or frustrated, parent….yeah, they make sense.

I would walk miles, collect pledges and wear blue. I think back 19 years and it would have made sense to me. These people want to help. They want to understand. They want my child to have a better future. Right up there with Uncle Sam, mom and apple pie.

Now, I can see things differently. A$ has only been around since 2005. Their message is that Autistics should be pitied and their carers should be pitied. Autistics have no quality of life. Autistics can’t function.

The Autism community has many divides in it because of these statements. Parents want a cure. They want a better life for their child. Who wouldn’t? Autistics try to speak over the cries of parents who state their needs are more important than those of Autistics. Parents tell those voices that they have no clue….that their child deserves better.

News flash….Autistic children grow up to be Autistic adults. Those voices that are being silenced now represent the voices of children who should be heard. By shouting over Autistics, parents are silencing their own children. A$ supports the idea that a parent deserves more….that their child is a burden….that the child won’t understand anyway.

But we do understand. Far more than we are given credit for understanding. Humans feel love. And they feel hate. They can tell when someone is dissatisfied with them. While your child may not speak, you are being told what is important. But if you listen to A$ for parenting advice, you are receiving affirmation that you are more important than your child.

So, no. No to changing a light bulb or the color of my shirt. No to supporting an organization that feels a cure is a fix. No to donating money that is being used to support a corporation that silences the very people it purports to support.

I’m no longer a naive young parent. I have two Autistic young adults. I was diagnosed Autistic three years ago. The message of A$ is that I have no value. My children are also without value. Yet, the three of us are successful in our professions. We live independent of government support. We love, feel loss and celebrate. Our lives are full of meaning.

It’s your choice to listen to A$. Your choice to give financial support. Your choice to make your children into burdens instead of celebrating them as individuals. I urge you to choose to support your friends and family instead of a corporation. If you want to give money, give locally to agencies that support families.

Listen to Autistic voices. Every person can contribute to the symphony that is life. The contributions may look different, yet each one is an integral part of the entire movement.

 

 

Six Years

I have an anniversary coming up. It’s not a happy one that I celebrate. It’s a sober reminder of how much my life has changed. Six years ago, I fell ill with an unknown disease. I missed a long anticipated family trip because I was hospitalized. I had three surgeries within 3 weeks. I spent weeks in the hospital with no one knowing what was wrong. I learned what a central line was and that it sucked.

I discovered that doctors can be clueless. Pre-2010, I thought they knew a lot. By 2011, I knew they didn’t. As I steadily declined, there were fewer and fewer attempts to figure things out. By 2013, I had lost 140 pounds and was unable to eat. A flaw in contracting made it possible for me to be seen at another hospital. So, I lived 14 hours away from my family for 6 months while the doctors figured it out.

And they sort of did. Lots of different things were discussed. I’m just now realizing how easily fixated doctors become when they see certain words. Words that indicate something might be fixable. It turns out, doctors don’t like unknowns.

I’m finding out that the less a doctor knows about something, the more they avoid it. I’m in a status quo relationship with my doctors right now. Hey, I’m still alive. It’s okay to let things go because I’m stable. No need to try to figure this out because, well, it won’t change anything, will it?

But, what if? What if just one doctor decided to look deeper and try to figure out what really went wrong and whether it could be fixed? Would I regain some freedom? Not have to carry a bag of fluids all the time? Be able to do things beyond walking? Eat a salad again (yeah, you never know what you’ll miss until it’s gone)? Not worry about how much I will “pay” for enjoying a meal out with friends? That’s a lot of what ifs.

Six years. I no longer have paid employment. I’m not sure anyone would hire me because of the bag of fluids on my back and the service dog by my side. I struggle with feeling helpless. With feeling useless. I should be doing something, right.

Well, maybe one day. Maybe one day I can be fixed. I can ditch the pumps and medications. I could go horseback riding. I could take a Zumba class (that may be a stretch anyway). I could go out to a movie and eat popcorn. I could live without medication alarms. I could go back to teaching. Flitting dreams right now.

You always hear people telling you to live each day to the fullest because you never know what life will bring. I encourage you to do so. Get out and be passionate. The laundry will still be there tomorrow. Take time to enjoy what you love doing. Slow down and savor your food. For that matter, savor everything.

Live. Love. Laugh.