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.

Cloak

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

” 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

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.

The comfortable patient

Two days ago someone said something to me that, well, left me a bit shocked and peeved. This person is a medical professional…a nurse to be exact. As we rolled through the litany of questions asked at all appointments, she commented on how comfortable I was being a patient. I asked what that meant and she replied that because I know “all the answers” I obviously love being a patient.

What?

So I’ve been thinking about how many other medical professionals feel this way about me. I mean, I keep an overnight bag packed because I never know when I’ll be admitted. It contains all my favorites including foods that I know won’t make me sicker. And pajama pants because, well, I’m not a fan of hospital gowns. And extra chargers for my electronics. Does this make me “comfortable” being a patient?

I don’t think so. It’s just after 6 years of this, I know what will help and what won’t. I know what treatments work and which ones won’t. I’ve reached the point where I can read shorthand notes in my chart. It’s only because of the twists and turns I’ve lived through.

But, is this why I am received with skepticism when I do go to the hospital? Is this why doctors think I’m just a drug seeker? Do my nurses really feel I’m just after attention? It sure would explain many of their behaviors.

So, to the medical professionals….no, I’m not “comfortable” receiving medical care. My knowledge isn’t a matter of me trying to “out think” you. It’s just that I live with this every single day. I’ve been through enough to be able to know how to get through one more time. Just because I’m not “sickly” enough for you doesn’t mean I’m not sick.

And pajama pants are way more comfortable than flashing everyone.

Ableism

I’m hearing this term a lot. It seems to mean that a social prejudice exists against disabled people. I’ll buy that. It’s been going on as long as there have been people. I guess it is just now becoming a cause to rally around.

Sure, we should treat all people equally. Wouldn’t that be great? <sounds of John Lennon’s Imagine in background> I’d love it if every time I spoke up about something I didn’t get thrashed to the ground. Seriously, because of my perceived ethnicity and socio-economic status, I am frequently accused of speaking from a place of privilege. Nope, didn’t win a piece of that last Lotto people. Yep, I’m middle class as others define it. I’ll even admit to being a white female as many seem to take umbrage at that too.

I get it. I haven’t LIVED “it” and therefore know nothing about “it.” Well, I’ve lived with disability. So, being able-bodied is the norm and anything else is disabled. I’m not normal because not everything works quite the same way as it does for others. I use elevators, ramps and escalators instead of stairs. I don’t sign up for 5K runs. I spend more time with doctors. I think I glow in the dark. I know I can’t do some things and probably won’t ever do them again.

But, my tribe has not sent me into the forest to die. They actually fight quite efficiently with the doctors who wish I would do that. Speaking of doctors, aren’t they just the very definition of ableists? I mean, they compare you to all their charts and graphs of normal and sit in judgment on why you aren’t. They try to fix you so you can be normal again.

But what if you were never normal according to those charts. Why does everyone spend so much time trying to fix things that may not be broken. Because they can’t accept that “not normal” may be as okay as it gets. I think that’s the heart of the ableism issue. Why are we trying to fix what isn’t necessarily broken?

I read a blog today about a permanently disabled wheelchair using bumping into two temporarily disabled wheelchair users on a bus. The temporary users where complaining about stairs and such and stating they couldn’t wait until they could walk again. They were visiting the land of disability.

I’m not visiting. I’m not a tourist. I’m not even lost. This is my normal. This is what being disabled feels like to me. You won’t hear my voice screaming to be accepted as normal, for I am happy with what I’ve got. I feel the discrimination. I understand wanting to be accepted for who I am. That would be awesome. However, for now, I will just wish that my doctors learn how disheartening ableism is for me. And be thankful that my tribe doesn’t feel the need to send me into the forest.

Nineteen

Dream on
Dream about the world were gonna live in one fine day.
Dream on
Spend the night in heaven, I’ll be here to light your way.
Someday tomorrow will smile
But little girl in the meanwhile
Dream on~ The Righteous Brothers, Dream On

Today she celebrates 19. It seems like a long time. And yet, she tells me it is not. But 3 years is a long time too. And to me, it’s not. Time shifting, changing, morphing into yesterdays, todays and tomorrows. A constant swirl of ever-changing landscapes that sometimes move so fast, you miss them. At other times, they are so slow you wish time would speed up. Ah, 19.

She’s a dreamer. The kind of person this world desperately needs. She sees things I miss. She’s adventuresome….on her own terms. A small smile that spreads. A burst of laughter that rings throughout the room. Impish.

I wonder how I can be so lucky as to call her mine. She may not like that all the time, but it’s a fact. We play together. We argue. We make up.

Dream on, my little girl. Keep dreaming about how things can be and one day, you will smile at everything you have become.