Category Archives: Life Happens

Brave

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You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up~ Sara Bareilles, Brave

I’ve found that I’m scared of the medical profession. This is not a good thing given my situation. In January, the hospital pulled some pretty fast moves on me. I went in with a clear issue, openly visible, and very visible on x-ray. I already knew what the problem was, but the only way to get it fixed was to go the the wickets of the ER. The next thing I know, there’s a guard outside my door, a psychiatrist has been summoned, and a “doctor” claimed she was afraid for her safety.

I shut down. That’s what happens when I get overwhelmed. PTSD kicks in and I’m out for the count. One of my triggers is losing control of my body, as in how am I treated. This visit didn’t pass the test. It did not feel right. I’m am extremely fortunate that right as this visit hit the point of no return, my spouse showed up. He called all the right people and got the situation sorted out. The hospital still says I left against medical advice.

The great part about this story is the level of denial and the closing of ranks. I have received three letters in response to my grievance. Guess what all three say? The hospital did nothing wrong. The day before, I had a feeding tube change. Sometimes, feeding tubes that are supposed to be in one part of the body flip and end up in the stomach. It can easily be fixed in Radiology. So, Monday they put in the tube. Tuesday we told them it had flipped and that was why we went to the ER. Wednesday, they replaced the faulty tube.

Yesterday, I received a visit from what is essentially social services wearing a different hat. They wanted to connect me with community resources so I wouldn’t go to the ER. It’s been almost 3 months and this is still coming at me. The ER staff also flagged my record. I am now terrified that if I have to go in, bad things will happen.

So, brave. We talk about all kinds of people who survive their medical situations as brave. We really have to. When you are up against the monolith of healthcare, coming out alive is a badge of honor to be worn proudly. I want to be brave. I also want to be treated as a person and not a medical record.

What do I know….

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I’m going down
Follow if you want I won’t just hang around
Like you’ll show me where to go
I’m already out
A foolproof idea, so don’t ask me how
To get started, it’s all uncharted~ Sara Bareilles, Uncharted

It’s pretty lonely right now. I am at high risk for catching COVID. Call me a sheeple, but yes, I’m hunting the vaccine now. My official window opens tomorrow. Maybe I’ll be fortunate enough to find a spot. I know not everyone agrees with vaccination. It is not a difficult decision in this house.

My family has been protecting me for the last year. I rarely go out and then only to places that have low risk. Of course, I go to my doctor’s appointments. Sometimes I go grocery shopping. Say what? We shop during off peak hours at a military grocery store where people understand that it may not make sense but they do it anyway. An odd side perk of being part of a military family.

I think a lot about life “before” and life “after.” I’m pretty sure “before” is a memory that will tap me on the shoulder every once in a while. It’s the “after” that is uncharted and promises to be interesting. I have tickets to a concert tentatively scheduled for July 8. I really hope I can go. I’d like to see No Shoes Nation having fun again. People watching should be declared a sport.

There you have it. Uncharted. No one can predict the future. I can hope to see my concert, but that decision will be made in a few months. I hope I get to see my family this summer. It’s been over a year since I’ve seen most of them. It’s a bit exciting and scary at the same time. Uncharted.

Generalization

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I’m tutoring now. One of The concepts in Language Arts is Generalization. I teach my students that generalization is not something they should resort to unless they are 100% certain that what they say/believe is 100% accurate.

Since it is almost impossible to say anything that holds 100% accuracy, generalization should rarely come into play. But what about when you have the same experience over and over? While it may not happen every time, it still seems to keep happening.

My brain keeps telling me it’s my fault. I’m doing something wrong. I made a bad decision. My friends and family are quick to point out that the only “bad” decision I’ve made is to keep falling for it.

And so, because of a few, I’m changing. I’m not going to keep falling for “it.” In my case, “it” are people who consistently take advantage of my generosity. You see, I’m a firm believer in pay it forward, karma and all the good things in the world. Lately, I’ve been getting blindsided by people who are not on the same page. They take and then expect more. Nary a thank you in sight. I’m not talking buying a friend some lunch. I literally let someone take a 7-week vacation from their responsibilities. They lived in my home, ate my food and asked me to drive them places (no, they didn’t have a car). They criticized me and made it so my family avoided coming home each evening. Today I spent 2 hours “cleaning” what was supposedly already clean (and my standards are basic sanitary, not white glove).

So, I am done with people like this. I am generalizing that people who don’t say please and thank you are not on the same page and don’t deserve to enter my life. There it is…100% of people who take and take without saying thank you aren’t worth my time. I feel a social media cleanse coming on.

Sometimes, you just have to generalize to understand something.

 

Left Behind

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There’s so much about Autism that creates empty space. You want friends, but being social is damn near impossible. You want to work, but landing that job requires some skills you don’t know how to express. You want company, but the thought of a “party” is draining. You want people to value YOU, but they can’t see past the diagnosis.

Other things make me feel like I live in a different age. Autism $peaks was founded in 2005, 8 years after my son was diagnosed. It was never part of our “awareness” as they seek to catch vulnerable parents right after diagnosis. ABA started flexing its wings in 2004, although it’s been around since 1960 as a way to rehabilitate social deviants.Hopefully that gets a few of you thinking.

Just today on social media, I was following a conversation about all the therapies and equipment being provided to families with children on the Spectrum. And I have to wonder, with all this support, how come Autism $peaks isn’t obsolete?

And yes, I do wonder how things would be different if my children’s (and mine) needs had been addressed instead of being punished. Tactile defensiveness? You’ll outgrow it with exposure. Social awkwardness? Things change with time. Stimming? You’ll need to stop that to fit in. Here’s a substitute action until you learn to quit.

Now I understand some of the bitterness I feel towards people. I’m looking at “haves” and “have-nots” while wondering if it really makes a difference. If you “have” all the latest and greatest shiny things, will you eventually exceed expectations because of the shiny things or because you can “pass?” Did we miss out because we made do with what we had, that didn’t include any shiny things?

I guess we’ll have some answers 10 years from now when this group of Autistic children are grown and starting their adult lives. Did they benefit or are things still the same? Are they better at “passing” or have they reached acceptance both within themselves and their communities?

Food for thought……

 

Autism Privilege

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Why not? Everyone seems to be tacking the word “privilege” onto descriptors. I have “white privilege” because of the color of my skin. I have “economic privilege” because I have a roof over my head and food on the table. The one common thread is I was “given” these labels by people who were different from me.

So, Autism privilege. The current discussions in the communities I frequent are of two minds. First, there are Autistics. All kinds of Autistics from across the spectrum. Autistics writing and speaking up. We’re just spilling out of neat little boxes where others put us.

The second kind are usually parents. They have kids on the spectrum, but are not themselves Autistic. You might see them referred to as “Autism parents,” usually by their social group. Some of these parents are pretty convinced that their child’s Autism is what entitles them to Autism privilege. A name which they gladly accept for all their sacrifices.

See the difference? Autistics speaking for themselves in any fashion are a threat to deep-rooted beliefs. But “sacrificing” yourself by raising your child gives you privilege. Seems a bit backward to me. Why would I choose to listen to those who claim privilege over those that are Autistics? Well, I don’t.

Autism $peaks seeks to drown out Autistic voices. They are claiming privilege on the basis that Autistics are lesser beings that require handholding. And the public buys it because obviously A$  knows a lot about Autism. That’s the voice of privilege. Not experience.

Listen to the voices. Hear that Autistics feel marginalized by organizations and people who survive by claiming a privilege that is not theirs to claim. Change your perspective and you just might change someone’s world.

Guinea pig

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In the colloquial terms we are familiar with, a guinea pig is something you try new things on. It’s a catch-all phrase that people use to indicate they are trying new things. Let’s be guinea pigs by going to a new restaurant. Let’s be guinea pigs by getting makeovers. Let’s be guinea pigs by reading books outside our comfort zone.

I get it. What I don’t get is when people make their kids into guinea pigs. I’m not talking about offering up peas instead of carrots. I’m talking about therapy. Did you know that Applied Behavior Analysis has been in use since 1960? That it’s popularity picked up in the 1970s? The process had been used primarily on people with “social maladjustment.” It was reborn in the 1990s as a means of “helping” people adjust to society.

In less than 20 years, ABA has gone from a fringe treatment for social maladjustment to a widely accepted “therapy” for people with Autism. The focus is almost exclusively on exterminating unwanted behaviors. Coping skills aren’t the focus. Rather, learning to be “normal” is the desired outcome.

While teaching your child that they must fit in a box to be “normal?” Who decided that boxes were necessary. People are criticized for allowing their children to explore the “not normal” parts of life. If it makes me happy to flap, spin or stim in another way, what difference does it make? Why does your normal have to be my normal?

Guinea pig. Therapists may or may not really understand ABA. They do “understand” that behavior must be changed to “normal” to measure success. Therapists try many different approaches to accomplish this goal. And you are a guinea pig throughout treatment as they find ways to homogenize people.

How boring. Diversity is what keeps us discovering, exploring and learning. Embrace acceptance of things that differ from your expectations. We are all unique. We all have things to offer. Acceptance makes us better human beings.

Shine

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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.

I’m Here

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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$.

 

Just Spit it Out

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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.

Yes, I Can

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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.