Tag Archives: Autism

Autism Blogging

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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

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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.

 

 

Cloak

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About 30 years ago, I was really into reenactment. My mother made me a full circle cloak. It’s a soft brown corduroy that reverses to a navy blue cotton. It has a hood that hides my face. Yes, I still have my cloak.

Some days I want to dig out my cloak and pretend it makes me invisible. I’d like to go about my day in anonymity, without forced interactions. I’d like to just wrap myself up in my cloak and disappear.

I have a metaphorical cloak too. It’s the armor I don every morning as I prepare to face the day’s challenges. Some people pat down their pockets to make sure they have everything. I run down a mental list…sense of humor (check), sanity (most days), emotional sunblock (check), heart not on sleeve (maybe), proverbial duct tape (always comes in handy).

Much like the soft brown cloak, my other cloak is used to keep me “safe” from whatever the day throws at me. And, like my fabric cloak, there are places where the cloak swirls and allows things to slip past my mental armor and inflict great pain. It doesn’t matter how hard I try, something always slips past.

So, here I am typing. Wounded and knocked about, but still trying to patch up the damage from the last few days. Drained, spent, exhausted. Living in a world where decisions are made about me….without me.

Grrrrrrr

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” I think these are both good things as 1 in 45 children with autism is nuts! And not looking for a cure would be even more crazy. There seem to be 2 sets of parents, the ones who want answers and the ones who kinda gave up and have found their own way to deal with the fact that their child will always be autistic. I am a why parent and I think there’s nothing wrong with that. There’s a lot of groups that censor and bully parents who ask why and want answers because it doesn’t fit the official narrative that they have deemed acceptable for discussion. To be honest it’s very upsetting to be downtrodden by my places that claim to “support” autistic families when in fact censuring conversations and ideas is the total opposite.” from a social media site

Background. The discussion was about the monkey trials used to find the cause of Autism and thus lead to a cure.

Let’s look at this sample. 1 in 45 is nuts! Not sure where that number came from, but 1 in 15 people enjoy Skittles. Many years ago I was told about lies, damn lies and statistics. You can twist numbers any way you want to prove your point. Hey! did you know that 1 in 67 people have allism (as in I’m all that!)? Maybe we should be researching that.

The word deal is so loaded. Well, you could be dealing a deck of cards, but I think they mean “put up with” in this case. Put. Up. With. Seriously, maybe we ought to require a parenting test before you can procreate. I “put up with” crayon on my walls, dirty diapers, sibling fighting, smeared peanut butter sandwiches and so on. Yep, I learned to “deal” with childhood. Did it anger me as I mopped up the spilled juice yet again? I’m sure it did. Did I stop serving juice? No, because part of the package is “dealing” with the consequences.

Bullying.  Oh my. How is not accepting your child considered “not” bullying? How is your desire to make your child change come hell or high water “not” bullying? Humans need love and nurturing to grow into nurturing human beings. If you are always looking for a “better” child, how does that make your child feel? If the people who are supposed to love and support you think you are deficient, that leaves a mark or two.

Suppressing ideas. Oh, please. Now you are just whining. How do you suppose your child feels when you yell at them? Or tell them they don’t know anything? Or refuse to engage in conversation because you “KNOW” you are right? But, you are the parent so it’s ok. You don’t want to hear the Autistic voices. You don’t want to hear the voices of those who disagree with you. You aren’t asking to be heard. You are demanding that your voice be the only sound.

Nothing about us, without us. If you don’t want to hear other voices, get off social media. Find a nice small community that shares your thoughts. This is here. This is real. If you are truly trying to understand, then you would hear the thousands of Autistic voices trying to tell you there is a way. It’s called acceptance. It doesn’t involve being a “martyr” because you have an Autistic child. It doesn’t involve spending thousands of dollars to “fix” that which is not broken. Just accept that your child loves you and all you need do is reciprocate.

Peeved

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It just happened again. Someone brought up a “cure” for Autism. Some comments were thoughtful. Others were clearly written by people who feel overwhelmed by Autism in their families. More than one person pointed out that a cure would allow their loved one to “be a better person.”

Or, to “relieve their suffering.” Perhaps to “make it easier to fit in.” I was just messaged that if I don’t want to be judged, I shouldn’t judge. Yes, this is a semi-live post. Oh, look. A cure would “make society better” and “cost less money.” These are apparently perfectly valid reasons for wanting to change the very fiber of a human being.

We continually shove this in closets. No one talks about the genetic testing that presents parents with an opportunity to abort a fetus with birth defects. Yet, it’s practically a routine part of prenatal care. Shall we devise a screen for “the Autism gene” and give parents that option?

Oh, some will say absolutely. Let me check….yep, a parent should have that option because I can’t possibly know how that child’s life will be and it could be a “mercy,” A mercy? No one can predict how a child’s life will be. If you aren’t willing to spin that roulette wheel, then don’t procreate.

I get that Autism is a spectrum. I get that it ranges from severe to mild and has many, many co-morbid conditions. I get that it is harder to be Autistic than it is to be not Autistic. But is that enough to declare a war on Autism and Autistic? Is that enough to encourage eugenics?

Are you uncomfortable yet? You should be.

Job Interview

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Dear Hiring Committee:

I made it through the screening process. You only know what I put on paper so far. Now we meet for the first time. You seem like an affable group. Smiles and handshakes all around. Then, “What’s your dog’s name?” A harmless question, really. But you noticed I use a service dog. You seem okay with it as she settles at my feet ignoring everyone.

The interview goes well. We have a sheet of prepared questions, ten in all including the ultimate “Do you have any questions for us?” I answer them easily, gauging your interest by the notes you take, or don’t take. I see you watching me and hope it’s because you’re hanging off my every word and not wondering what’s so wrong with me that I have a service dog.

Oops. I “forgot” to mention I’m Autistic. I can pass off as NT pretty well. I’ve been doing it most of my life. You don’t seem to pick up on any of my stims (yes, I rub the skin between thumb and finger when I’m nervous) or the bit of rigidity that sometimes shines through in my answers. I choose not to disclose because I’m afraid it will bias you. I’m afraid you will only see my Autism and not all the experience and qualifications I bring to the table. I’m afraid you will judge me not worthy to work because you are not familiar with people like me. Whew, made it through the interview!

Oh wait. I “forgot” to attach myself to the bag of IV fluids I run all day using a pump. It’s a bit obvious, you see. It makes me look fragile. The pump’s clicking noise is like an adding machine. Ka-clunk. Ka-clunk. Ka-clunk. Every 8 seconds. In a quiet room, you can hear the pump doing it’s job. I don’t want you to be distracted from ME. I’m the focus here. Can I do the job? YES, I can. Do you need to worry about my pump? No. I can handle it. The fluids make it possible for me to ask for this job. You see, they keep me out of the hospital.

It’s kind of funny that the job is with Disability Services and I’m afraid to disclose my disabilities because they might disqualify me. That’s how strongly I sense the stigma of being disabled. Sure, this will all come out if you hire me. I’ll deal with that when it happens. At least I know you hired me for ME and not out of some misguided sense of filling an EEO place. Yep, we’ll have to work around appointments, perhaps more so than an “average” employee but not so much that I can’t do the job.

There you have it. You didn’t ask and I didn’t tell. There’s a certain beauty to this dance. We both have to take risks and hope the payout is worth it. I’m sure you didn’t disclose everything about the job. I quite sure you didn’t tell me about the personalities I will have to “fit in” with in this position. So, I don’t feel bad about leaving out a few things that really don’t impact how well I can do the job. That’s what this whole process is about, right? Finding the most qualified candidate to do the job.

Sincerely,

Oysters and Life

 

Bully Me 2

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Thirteen in the thick of a cornfield
I learned to fight, keep roads tied, and not chill
Never did change, stayed strange, hopped a train
My first chance I got out of Smallville
Life has it’s way of movin’ you on, don’t it?~ Kenny Chesney, Don’t It

My daughter asked me a question a few weeks ago. How did I deal with the bullies in school? Bullying has become a front stage issue. When I was much younger, it was tolerated as long as no blood was shed. Boys will be boys and all even though girls are sometimes much wore bullies.

Truth is, I did learn to fight. Most of the time I used words. Trust me when I tell you that using words is challenging, especially when you have an extensive vocabulary. I fluently spoke three languages…the Queen’s English, American and Sarcasm. Unfortunately, Sarcasm only works if you use words the recipient understands. Otherwise it just goes right past them.

I threw a fair few punches at school. By the time I was in Junior High, the pack of bullies drew immense pleasure from teasing me. My locker was broken into. I was tripped in the classroom. I was shoved to the ground in PE. So, I learned. I learned how to fight back. I shouldn’t have needed to, but the teacher’s didn’t stop the physical threats. So, I got suspended. Before school, in school, after school. I was a regular on the circuit. By eighth grade, we were back to just words.

By high school, I had learned to just avoid the bullies. Head low, mouth shut. Move along and stay invisible. By my junior year, I had checked out. I started attended college and working. Not much time was spent at the actual high school. My senior year I had 3 classes, including two teacher assistant slots.

To answer the question…I dealt with bullies by becoming a bully. Not exactly a proud moment when you realize that. Certainly not the advice I would give my child or anyone else. We are much more aware of bullying and it’s effects than we were thirty years ago.

I did pretty much what the lyrics above talk about. I didn’t grow up in Smallville, but I left when I was 22. I remember it felt good to leave all that behind and start over. And over. And over. In some ways, my nomadic lifestyle was a blessing in that I could look forward to a move and reinventing myself. By the time we settled, I had a much better grasp on things.

Yes, it took me until my early 30s to realize I could be me. So my advice to my kids? Head up, feet forward and keep moving. Soon, the bullies will lose interest. You will learn to focus on the good things around you and the bullies will fade into the background. Does this always work? No. But about 75% of the time you are able to keep moving.

That’s what counts…being able to move forward. Each day will bring fresh challenges. Head up, feet forward and you will meet those challenges. Life is messy. You don’t need to clean up everyone else’s mess. Focus on growing into the best version of you. That’s what I would say today.

Speaking up

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Today is Autistics Speaking Day. No connection to a certain organization that thinks Autistics can’t speak. It’s about Autistics telling their stories. So, here’s mine.

I went to public schools in the US. I have memories of being derided by peers, shunned, called to the office and generally “not good” times. I often wonder why my parents didn’t “crack” more often given how much trouble I got in to. Note to self: Arguing with teachers when you are the student is relatively impossible.

I had good times too. Caring teachers including Bob Cleckner, Randy Nissly and Carol Dunning. There were others who allowed me to embrace my inner weirdo. I wrote papers on Norse Mythology for Gayle Fisher because everyone else wrote about Greek or Roman. Let’s just say that not having the Internet in 1985 made that project very challenging. And yet, she let me go and learn instead of trying to force me into a box.

I still believe that is the key to my relatively successful adult career. My actions and thoughts may seem “not mainstream” but I’ve learned that’s okay. I’ve learned to express myself in ways that while “not mainstream,” are close enough to be interesting. It’s okay that my stream runs parallel to others. It makes life more interesting and certainly more satisfying.

I was diagnosed 2 years ago as an adult. To borrow some words…suddenly things made more sense to me. At first, I tried to carry on as I always had. Now I openly embrace my neurodiversity. I tell people. Not all the time, but if they comment on the way I present things, I will say that thinking differently allows me to expand their horizons. That being Autistic is challenging, but not impossible. That I can still hold a job and a conversation, even at the same time <sarcasm>.

I have been fortunate that the only abuse inflicted upon me was through the standard punishments at school. I don’t recall that I was singled out. I was in the office a lot, but so were many other kids. I spent my fair share of being grounded at home. Through the long lens of time, I actually had a pretty awesome childhood.

I feel for those who didn’t have the opportunities I did. No Autistic should be penalized for being Autistic. I do remember that we had special schools and that I did not see a person with a permanent disability in my class until about 1980. I can’t tell you what went on in those schools other than my mother volunteered at one.

I can tell you that in 1992 I worked in a school in Virginia that still had a “quiet room” that was padded. Most of the students spent some time in there every day. I will also say that it was a school for the emotionally disabled. After being punched and kicked a few times, I understood why the room was used. Students were not placed there just for verbally lashing out. It is hard to describe even now. I’m not sure that de-escalation techniques would have worked. I do remember that there were safety checks every 3-5 minutes and as soon as the student was done with physical lashing out, we brought them out and processed the what’s and why’s. No student spent more than 15 minutes in the room.

Today, I volunteer my time helping families affected by Autism. I help schools recognize the need for differentiated instruction. I speak for students who are struggling in mainstream classes. I speak for self-determination and recognition of different, not less.

So, there it is. As an adult, I am reflecting on the impact of Autism on my life. I understand not everyone shares my experiences. I do want people to understand that what shaped me as a child continues to impact me as an adult. I take the good with the bad and try to make the best of it.

 

Inspiration

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Today I met an amazing woman. She’s a foster mom with two of her own kids at home. Yesterday she received a call from social services asking her if should could take a sibling group of 4. With less than an hour’s notice, the children were at her door. As they were being dropped off, the social worked said…by the way the 7-year-old is Autistic.

It turns out that the woman works with a friend of mine. My friend gave her my number and urged her to call me for ways to work with the 7-year-old. The foster mom has no experience with anyone Autistic. Yes, she did call me. We texted over the next five hours as she observed the children. We talked about giving instructions and requesting compliance.

This morning I went to her house to observe the children before we went to the elementary school they will be attending. I had already explained to “mom” the possibilities and what the best placement might look like. As we sat in the conference room with the school staff, mom tried to keep up. The school staff kept speaking “school-ese” and didn’t even notice mom had no idea what they were talking about.

So, I jumped in. As a special education teacher, I was able to help the staff understand some of the unique needs I had already observed. Mom was able to get questions answered in terms she understood. The 7-year-old won’t be able to start school until Monday, mainly because of the many pieces must be in place for him to be safe.

I am really glad this mom reached out. She’s doing something most of us wouldn’t dream of doing….taking in children who have nowhere else to go. She’s going the extra mile to be an anchor for these kids whose lives were turned upside down. And she’s willing to learn more about Autism instead of refusing to take the kids. That is an amazing person.

 

Bully Me

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I have so many different things to write about because of things that are happening now. But I read this article and I just couldn’t stop the words from tumbling out of my brain. You may have seen it. You can find the original here : Bullying.

In case you don’t have time to click and read….

  1. Bullying promotes Autism friendly programs. If you believe this, let me give you my Paypal info too. You can just drop some cash in there instead of supporting said “program.”
  2. Team Work: Working together as a team in partnership with you as the parent, the school’s teaching staff, aides, principal, counselors, and psychologists will provide the safest environment for your child to learn and enjoy.
    Um, yeah. I don’t know about you but no matter how hard I try, I can’t get the school to cooperate. It’s always my fault.
  3. Autism Awareness Every Month: Yep, people become really aware of how “perfect” their kids are. And they still don’t give a crap about you, your child or your family.
  4. Kids Learn Skills: The bullies become better bullies and the victims become more traumatized.
  5. Builds Strength: As your child learns defensive skills from you, his friends, and his teachers, he is growing stronger connections with everyone.
    As your child is getting either the physical or emotional crap beat out of them, I’m sure this is what we’re all thinking.
  6. More Friendships: Because we all know that other kids flock to the victim’s side and abandon the bully, who is usually seen as more popular.
  7. Overall Well-Being Are you seeing a pattern yet? I would love to know how my kid’s well being is improving as more and more peers shun my child for being a victim.
  8. Healthy Relationships: Ways to deal with bullying also help your child deal with sibling rivalry, ‘stranger danger’, or any other personal threat.
    My kid doesn’t even know what a “healthy relationship” looks like because someone is always beating the crap out of them, including the verbal abuse from the teacher.
  9. Increased Life Skills I can see this one. I’ll tell you why in a few sentences to follow.
  10. Self-Esteem: Ironically, and in spite of the bully’s goal to do the opposite, your child will grow self-confidence and self-preservation esteem. By now, I am wondering exactly what corner of this fair land the author hails from.

This is just a “kids” version from the author. Let me know give you a peek behind the curtain….

I’m an adult with Autism. I’m 47 years old. Some of my most vivid memories from my childhood involve many of the above items. I didn’t develop “self-preservation” skills. I survived. I survived the forced teamwork, where I was always picked last (how’s that for a self-confidence boost). My parents had the joy of dealing with the school on  a regular basis. It was not even cordial. Most of the time, my mom had to come and explain why I was in trouble. You know, because the staff was so supportive and understanding.

Life skills…I did learn to beat the crap out of bullies. I did learn how not to tick off my teachers. Yep, don’t question them at all. I learned to blend in by wearing the “in” style of clothes and mimicking my “successful” peers. I guess you could say I did learn life skills.

So, here’s the deal. The author of this article claims to be an ABA professional. She claims to have helped thousands “find their way” through books and seminars. I don’t believe in ABA. Maybe it’s because it didn’t exist in my world. Maybe because I feel focusing on forcing yourself to be something you are not is a waste of time. Maybe it’s because I didn’t eat enough glue in preschool, wait….kindergarten.

I am a living, breathing human being who still has to deal with bullies. They are everywhere, including on the internet in articles like this. Why is it EVER okay to say bullying is a good thing?