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.

Bully Me

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?

 

 

Courage

That one word evokes some strong feelings. It makes us think about things. While most people don’t consider it a judgment, they use the word to judge others. Questions like “Exactly how is that courageous?” have people second guessing themselves.

I think about the people in my life. Courage is parents sitting beside their daughter who was in a head on collision with a semi-truck, not knowing what each day will bring. Courage can be found amongst my friends living with rare, disabling diseases including gastroparesis and Ehler-Danlos Syndrome. Courage is walking out of a doctor’s office and facing the world even though you’ve been dealt another blow.

Courage is with those taking one minute of life at a time as the learn to live with mental illness. For too long, society has hidden how much courage it takes to keep moving forward when every fiber of your being is screaming “enough!” Courage is talking about your own mental illness so you can help others. Courage is standing with those who are living with mental illness and supporting their journey. https://hpwritesblogs.wordpress.com/2015/06/18/www-thesemicolonproject-com/

Courage is being there for the youth in your life. It is 3AM wake up calls because a diabetic monitor went off. It is taking in a  youth who needs guidance, yet is unable to turn anywhere but to you. Courage is raising a child to see that they are priceless, even when others have written them off. Courage is accepting that different is not less. Courage is biting back the tears as your child is bullied yet again. Courage is building a helping village, brick by brick, knowing that not everyone will understand.

Courage is picking yourself up after being knocked over. It is seeing your own value and not allowing others to take that from you. Courage is continuing to improve yourself, even when you feel like you are as good as you can possibly get. Courage is recognizing that change is part of growth, no matter how painful.

Courage is helping your fellow humans reach their potential. It is being sensitive to the fact that different is not less. It is understanding that words hurt and should be used with care. Courage is being willing to help instead of shying away. Courage is compassion.

Let courage take root in your life. See the possibilities of being courageous. Consider all that you personally are living with and recognize that others have things going on in their lives to. Reach out. Be courageous and step out of your comfort zone. I think you will be amazed at what you discover.

Invisible

Today, I’d like to be invisible. I’d like to go to the places I would normally go and not have people notice me. I’d like to just get through one day without the conversations that I must have with people who don ‘t seem to understand. I’d like to go one day just doing my “thing” and not have criticism thrown at me from all directions. One day without being judged.

I imagine it would be a peaceful day. Not in a smell the sunshine kind of way, but perhaps in the way I imagine people not living with chronic disease or mental illness have. It’s been so long since those days existed for me that I barely remember what it’s like to be carefree, like most of the people I know claim to be.

Yes, that’s right. I said claim to be. I just can’t fathom the idea that everyone else is living a stress free, no complaints life. It seems foreign to me that everyone else can completely cope with all the things going on in their lives. I think that they are just as likely to fall apart as I am. They’re just better at hiding it.

No one likes to admit weakness. No one likes to lose control in front of others. No one likes to be ridiculed. No one likes to be shamed, No one likes to feel helpless. And yet, the world is full of people who thrive on making others feel that way.

As a society, we have made it okay for people to do all of the above while we ignore the person on the receiving end. We have made it okay to mock people who are different from us without regard for the impact our words and actions have on an individual. I’d like to believe it’s a defense mechanism….deflecting someone’s comments away from ourselves lest we crack. But that’s not right either. Understandable, but not right.

Think before you speak. Think about how your actions impact others. I’m not talking on a global scale here. Just in your day-to-day relationships. Set aside your fears of being the next target and show support for someone who is being targeted. Set aside your need to feel “better” and understand that we all need to feel accepted. Recognize the beauty of diversity and the power it has to bring beauty to our lives.

Most of all, know that many of us struggle daily to keep up with expectations. Try not to make it harder. Try not to discourage others. You have no idea if one day, you’ll be the one who needs encouragement to carry on.

Dear Doctor…

Do not go where the path may lead, go instead where there is no path and leave a trail.~ Ralph Waldo Emerson

 

 

Dear Doctor,

I really wish you could understand that the human body is an ecosystem. Everything that happens affects every part of the human body. It’s not as simple as fix this and everything will be fine. Your fixes have frequently created more problems in my ecosystem. And, by the way, each ecosystem is unique and responds differently than any other ecosystem out there.

If only you could pull all the information I have about my ecosystem into your head and see what my life really looks like. Maybe you would stop guessing so much. Perhaps you could admit that you don’t understand and need to study things some more. On a shooting star, I wish you’d stop telling me that all my problems are psychosomatic. I have consented to your tests, hospital stays, blood draws and office visits so you could have data you knew how to quantify and draw conclusions from. Now all I want is for you to follow through and do your job.

That’s right. Do. Your. Job. Use your powers of inquiry that got you into your chosen profession. Stop limiting yourself to the narrow box that has come to define your idea of disease. It’s rumored that we use less than 20% of our brain’s capacity. Imagine what you could do by committing even 1% more to solving the mysteries of my life.

Stop complaining about me wanting answers. Stop denying me basic medical care because you don’t believe I have any illnesses. Stop reading just one line of my chart and spend a few minutes seeing where I’ve been to help me get to where I’m going. Stop treating me like I’m an idiot and have no idea. Stop trying to use terminology you think I won’t understand in an effort to “satisfy” my line of questioning. Just STOP.

Before you start griping about me, think about how you would feel being on the receiving end of your statements. Think about what it’s like to be told you are purposefully making yourself sick. Think about the impact your words will have on me. I came to you because I wanted help and hopefully answers. Not because my self-esteem needed another hit.

Act. Tell me your theories. Give me space to tell you my experience, which may answer more questions that you have. Apply your knowledge and realize that my ecosystem is rather precariously balanced. Don’t just toss out random lines of thought. Do your research and be ready to DISCUSS, not tell, the information. You see, I’m not quite the idiot you make me out to be. Maybe that’s what knocked you off course and made you think it’s all in my head. Just a hint…while I may not have a medical degree, I’ve been sick long enough to know my own symptoms AND to recognize where you are blowing smoke up an orifice.

Sincerely,
The Patient You Blew Off Today

On my Mind

She had been doing this for some time when a man approached her and said, “Little girl, why are you doing this? Look at this beach! You can’t save all these starfish. You can’t begin to make a difference!”

The girl seemed crushed, suddenly deflated. But after a few moments, she bent down, picked up another starfish, and hurled it as far as she could into the ocean. Then she looked up at the man and replied, “Well, I made a difference to that one!”

 

I’m just going to throw this one out there. Mental health is just as important as physical health. Study after study shows that people who take care of all aspects of their health live longer, more fulfilling lives. Like many health related things, however, people don’t want to talk about it.

So I’m going to talk and hope at least one person listens. In the last two months, several people I care about have become so disillusioned with life that they decided suicide was the only way out. While I’m not an expert, I’ve been there myself and walked with many others who have felt this way. I’m not going to sugarcoat things here with the hope that at least one person understands what I’m saying.

At the time a person reaches this point, the sense of reason is gone. There is literally nothing visible to the individual aside from release. It’s like tunnel vision or wearing blinders. Distraction is almost impossible because the fixation on relief is so strong. If someone is well and truly only focused on the relief, there is not much anyone can do to stop the inevitable conclusion. You can try to talk someone off the ledge, but a truly determined individual will not hear you.

Which brings me to my next point. We’re social beings. If you start to see a friend withdraw, ask why. This is the time your words may be heard. Waiting until the cries for help become so obvious they can’t be ignored is too long. Engage your friends on a regular basis. Check on each other and listen instead of thinking about your next activity. Just imagine if we all paid as much attention to the people around us as we do to celebrities. Everyone’s well-being would improve.

The flip side of this is to recognize when you are over your head. Some people need more help than others. While a chat or a hug may help someone regain a wider view, it’s just not possible for everyone to bounce back as easily. The airline advisory to put your own mask on first is so true. If you become fixated on helping someone who doesn’t want help, you can go down as well. Especially if the person is ultimately successful despite your efforts.

Ironically, mental health professionals are some of the lowest paid individuals and yet they carry such a huge responsibility. My insurance only reimburses up to about 1/3 of what they pay my physicians. As my news feed becomes plugged up with stories about how mental illness is to blame for most shootings, I just think about how great it would be if we not only had the professionals, but also the respect for the profession. Money isn’t everything, but everyone has bills and it would be nice if the people we hope will step up could be compensated accordingly.

Many years ago a movie titled “Crocodile Dundee” screened across America. The title character is from Australia and ends up in America. He has a conversation about life’s troubles with the female lead who mentions her therapist. And the words he spoke “don’t you talk to your mates (friends)?” still reverberates in my mind. We have all become so busy that we have forgotten about our mates. In this crazy, self-absorbed society we have left our friends to fend for themselves. And that is just not cool.

For those of you who contemplate relief on a regular basis, I urge you to seek out professional help now. For those of you who think, but don’t act, reach out. There are many avenues out there available to you. Sometimes you just need to see around the next corner. For those of you who think you’re immune, I ask you to share your strength. Engage with your friends and community. Help others see the sunny side of life.

We’re all in this together. Don’t place blame. Shaming people because you think they’re weak is not okay either. You don’t know what is up next in your life. Or how well you will cope with the next curveball life throws you. It’s okay to ask for help. It’s okay to offer help. Don’t shy away from someone because they have hit a bump. You may be the one who makes a difference.

 

Woof, Woof

The dogs with the loudest bark are the ones that are most afraid.~Norman Reedus

Most people who really know me would tell you I’m a logical, methodical thinker. I’ve been this way for as long as I can remember. I look at situations from many different perspectives, analyze the information and choose a path that leads to the desired conclusion. To some, this comes across as manipulative or scheming. To others, it seems to be a knack for predicting outcomes. I found out tonight that to yet others, I appear defensive.

Oh yes. I was drawn into a service dog drama. For those not familiar with these incidents, they occur when one person feels they have the “right” perspective on something related to service dogs. Much like any discussion on a topic people are passionate about, there are always opposing views. I don’t think it’s unique to discussions about service dogs yet it seems that there is more baiting and needling within this community.

I’m sure many of you are familiar with the “lies, damn lies, and statistics” methodology. In short, the more “facts” you can throw out, the more convincing you appear. The problem is, anyone can find “facts” to back up their position. Information flows freely through the Internet and you can find other people who perceive things the same way you do with just a few keystrokes. Just because you have more “facts” in your argument does not make your argument more valid.

In my experience the harder you push for your “facts” to be believed by others, the more you have to hide. It’s one thing to take a stand and state your beliefs. It is an entirely different thing to intentionally mislead and knowingly agitate people just for fun. In my book, that just makes you a bully.

So read the quote above. Think about the people who push “facts” at you and remember that a loud bark does not necessarily indicate confidence. Sometimes it’s just a distraction to keep you from pursuing independent thought.