“You Will Become an Army for Your Child”

via The Mighty: https://www.facebook.com/Themightysite/videos/604998539647897/

 

When We Need Autism Awareness – via Erin Polk

It’s World Autism Day but you probably won’t see me wearing blue today. I’m wearing whatever shirt I could grab in my sleep deprived state that I won’t mind will be covered in food, pee or blood or all three. I probably won’t have a light bulb that’s blue because we haven’t had time to shop these days or to take the time to screw in some light bulbs to let our neighbors we support autism awareness. I think they are pretty aware when they hear our son’s screams or rages in the driveway

April 2nd is not when I need autism awareness or to spread it. I need it when my child is in pain and decides that destroying his body is a better idea and he bashes his head into the floor.

I need it when my son has a new health mystery because he can’t tell us what’s wrong and he screams and hurts himself in pain.

I need it when he is up all night, throwing his Bipap off, having behaviors or just not wanting to sleep.

I need it when we are alone fighting for service for months on end. While he’s medically unwell and hurting himself and we have no help, no respite and no break of any kind.

This year we are in a hospital fighting for help for him. He is battling hypoxia and a host of issues and has to have two staff with him at all times and restraints on his bed. Are you aware that this is a reality of many of our children? They can’t tell us what’s wrong so everything has to be tested and thought about. Their behaviors can increase as a result of pain and sickness to levels you’ve never seen. I need autism awareness at these times too and hope for doctors who will understand and see more than just behavior.

We need autism awareness in those dark nights where our tears fall and we wonder how we will ever make it through another day and with no help. We need autism awareness when we have to put a UFC helmet on our kid to stop him from banging his head to the point of brain damage. We need autism awareness when we have to get gloves and other protective equipment to protect him from severely injuring himself.

Where is the awareness then? Are people aware of this kind of autism. Kreed is a blessing as himself, but his autism part is not. Kreed and autism are not one in the same. It keeps him from communicating and living even a semi normal life and instead he rips his body apart. Do you know what it’s like to watch your child literally rip his toe nails off with his teeth? Are you that kind of autism aware?

We accept our son for who he is and fight like hell to get him the right kind of help so he can relax and enjoy his life instead of being racked with pain, hurting and not in control of himself. We work like hell to have him live his life in his own way and do the things he wants. We advocate for him and give him all the tools necessary to be successful.

But the world is not aware. As families continue to have to fight for necessary services and often do this alone or have to fight he medical establishments for correct treatment or even schools to provide something as basic as a communication device so they may have a voice. When I don’t hear about these stories anymore, I will know the world is more aware. But one day isn’t going to do it. Not even close. This is why we document and share Kreed’s story. It’s real. It’s uncensored. It’s our truth our life.

And states need to wake up and add autism to the list of conditions for medical cannabis. We wouldn’t even know what to do if we hadn’t been able to try Kreed on cannabis. It relaxes his ravaged body. It stops his head banging. It stops his biting and hitting and hurting. It helps his medical conditions at the same time. So when 48 states deny families the opportunity to see what their child can do just by using a simple plant, we are not autism aware.

So no, we don’t light it up blue or wear other autism colors. Because we still sit in dark moments and working like hell to save our son and give him a better life. We work every day to make this happen and we spread awareness every single day of our life and turn the camera on to show every meltdown, every failure, and every triumph and amazing moment. That’s how this world will become more aware. When the world can see autism and not just hear about it. When the world can see what our kids are capable of when given the right supports and quit fighting us on giving the right supports, that’s when this world will be autism aware. But seeing blue and knowing we have a family with autism in it is not even close to enough or scratches the surface. People see the blue, nod and move on. They don’t “see” the effect it has on our son or our lives and therefore doesn’t make lighting it up blue or whatever color effective.

People need to start getting involved. Help a a family out. Remove roadblocks to care. Include our son in regular activities. Be aware that autism is a spectrum and affects kids differently. Be aware that all the kids have various ways they communicate. Send a mom an iTunes gift card and give their family the gift of a communication app if they don’t have one and give a child a voice. Volunteer at your local day programs and hang out with these awesome adults. Lobby your local businesses to hire more staff with autism so they have a chance at more independence. Be involved. That’s the only way this world will become more autism aware. Lighting it up blue does not help awareness, advocacy or acceptance. DOING something does.

These are our thoughts today. Our truth. Our life. We share it in the open, uncensored every single day so that people can see the realities of nonverbal autism with severe medical problems and then you can truly become aware and understand what would actually help and not just wondering what light it up blue does.

Fundraiser

Kreed has been hospitalized almost exclusively since early February. As a result he has needed both parents at home because it takes two people to help deal with Kreed and takes two people to manage the home and be at the hospital for him. Kreed has now suffered through devastating pain with peripheral neuropathy, tonic-clonic seizures with his heart stopping, discovering his rare metabolic disorder that has gone un-treated for 18 years and now a recurrent lung disease. At this point, we don’t know how long he will be in the hospital and then don’t know how long I will have to be out of work for. So many from Kreed’s World have offered to help, so I have set up a paypal account to receive donations. We are appreciative of anyone who can or would like to help.

To make a donation, please use PAYPAL and send to erinmpolk@gmail.com

The Good Fight – Fighting Against Systematic Bullying

As some of you know, we have been in a legal fight with The Vanguard School in Colorado Springs for a couple of years now. Our 8 year old autistic son was expelled due to his disability. Today we found out that his federal case is a great precedent to parents and other attorneys.

At the COPAA** Conference in Philadelphia this year, attorneys from Maine made a presentation of the 40 most important federal district court decisions in the field in 2015. They listed our son’s case, Smith v. Cheyenne Mountain School District 12, 2015 WL 4979771 (D. Colo. Aug. 20, 2015) as number 22.

Yay! Fighting for your kid and not letting yourself be bullied by a school district DOES make a difference.

We also discovered that Robert’s case was cited by a federal court in San Diego, to overturn an ALJ’s decision that refused to uphold the “stay put” placement of a child in the school set forth in the child’s IEP.

This is a great victory for the parents and the child, not unlike the victory we achieved. Hopefully other school districts throughout the country will get the clue that they cannot continue to violate the stay-put clause.

Don’t be a victim of systematic bullying by school districts.

**The Council of Parent Attorneys and Advocates is a national American advocacy association of parents of children with disabilities, their attorneys, advocates, and others who support the educational and civil rights of children with disabilities.

 

Are You a Synesthete

Four percent of the population, when seeing number five, also see color red. Or hear a C-sharp when seeing blue. Or even associate orange with Tuesdays. And among artists, the number goes to 20-25 percent! This neurologically-based condition is called synesthesia, in which people involuntarily link one sensory percept to another. The colors, sounds, numbers, etc. differ among people (for example, you might see five in red, while someone else sees it in orange), but the association never varies within a person (that is, if five for you is red, it will always be red). There is a surprising overall agreement among synesthetes, however.

The primary perspective of the cause of synesthesia is a mutation that causes defective pruning between areas of the brain that are ordinarily connected only sparsely. Therefore areas that are disconnected within a human brain retain certain connections in synesthetes, which causes unusual associations. The location of gene expression leads to two different types of synesthetes: If the gene is expressed in the fusiform gyrus, the brain area concerned with perception, a perceptual synesthesia results, in which people will actually perceive, for instance, a number five colored in red. If, however, the gene is expressed in the angular gyrus, the brain area involved in processing concepts, a conceptual synesthesia results, in which people will not physically see the color red when presented with a number five, but will nevertheless experience an association between the two concepts.

I must admit, I am a conceptual synesthete (but only for certain numbers). Two is a nice light cream color; three is bright green; four is beige with a bit of light brown; five is definitely blood red; seven is ice blue. Eight wants to be something, but it’s difficult… Nine is dark, almost black. I don’t physically see colors, but when numbers are colored in something other than my associations, it causes some distress. I also paint and am very sensitive to colors and sounds in general.

I also believe that even though perceptual synesthesia may be relatively rare, it does not mean that a subtler cross-sensory undercurrent is nonexistent. I would not be surprised if many creative individuals were conceptual synesthetes. They may not necessarily physically perceive the connections between the percepts, but nevertheless may exhibit the facility in linking seemingly unrelated realms in order to highlight a hidden deep similarity. For example, in a sample of normal university students, those who had higher scores on the remote associates task (which requires finding a common word that can be combined with each of the three problem words to form a common compound or a phrase: e.g., ‘shine, beam, struck;’ solution — ‘moon’) showed stronger associations between colors and pure tones than people with lower scores on the same test. Similarly, synesthetes outperformed controls on the remote associates test. In addition, examination of poetry of Poe, Swinburne, Shelley, Blake, and Keats revealed that they all employed synesthetic usage in their poetry. These findings indicate that cross-sensory linkages may be associated with creative thinking.

I would be glad to hear from synesthetes, as well as from individuals involved in creative pursuits. What are your experiences? How do you perceive the world? How do your experiences affect your daily life?

by Darya L. Zabelina M. S vis Psychology Today

An Experimental Autism Treatment Cost Me My Marriage

By JOHN ELDER ROBISON via The New York Times

 

 

What happens to your relationships when your emotional perception changes overnight? Because I’m autistic, I have always been oblivious to unspoken cues from other people. My wife, my son and my friends liked my unflappable demeanor and my predictable behavior. They told me I was great the way I was, but I never really agreed.

For 50 years I made the best of how I was, because there was nothing else I could do. Then I was offered a chance to participate in a study at Beth Israel Deaconess Medical Center, a teaching hospital of Harvard Medical School. Investigators at the Berenson-Allen Center there were studying transcranial magnetic stimulation, or T.M.S., a noninvasive procedure that applies magnetic pulses to stimulate the brain. It offers promise for many brain disorders. Several T.M.S. devices have been approved by the Food and Drug Administration for the treatment of severe depression, and others are under study for different conditions. (It’s still in the experimental phase for autism.) The doctors wondered if changing activity in a particular part of the autistic brain could change the way we sense emotions. That sounded exciting. I hoped it would help me read people a little better.

They say, be careful what you wish for. The intervention succeeded beyond my wildest dreams — and it turned my life upside down. After one of my first T.M.S. sessions, in 2008, I thought nothing had happened. But when I got home and closed my eyes, I felt as if I were on a ship at sea. And there were dreams — so real they felt like hallucinations. It sounds like a fairy tale, but the next morning when I went to work, everything was different. Emotions came at me from all directions, so fast that I didn’t have a moment to process them.

Before the T.M.S., I had fantasized that the emotional cues I was missing in my autism would bring me closer to people. The reality was very different. The signals I now picked up about what my fellow humans were feeling overwhelmed me. They seemed scared, alarmed, worried and even greedy. The beauty I envisioned was nowhere to be found.

Seeing emotion didn’t make my life happy. It scared me, as the fear I felt in others took hold in me, too. As exciting as my new sensory ability was, it cost me customers at work, when I felt them looking at me with contempt. It spoiled friendships when I saw teasing in a different and nastier light. It even ruined memories when I realized that people I remembered as funny were really making fun of me.

And the hardest thing: It cost me a marriage. When I met my former wife (a decade before the T.M.S.), she was seriously depressed. She’d accepted my autistic even keel, and I accepted her often quiet sadness. I never really felt her depression, so we complemented each other. She could read other people much better than I could, and I relied on her for that.

Then came the T.M.S. With my newfound ability I imagined myself joyfully shedding a cloak of disability. I thought she would be happy, but instead she said matter of factly, “You won’t need me anymore.” My heart hurt, and I felt unspeakably sad. Later, people at work told me they’d liked me better the way I was before.

I’d lived with my wife’s chronic depression all those years because I did not share it. After the T.M.S., I felt the full force of her sadness, and the weight of it dragged me under. At the same time, I felt this push to use my new superpower, to go out in the world and engage with other people, now that I could read their emotions. When I think about the way my behavior must have appeared to the strangers I encountered, I cringe.

Normally people change in a marriage, over time. What happens when one person changes overnight? We were divorced a year after the T.M.S. experiments began. After the divorce, I embarked on a disastrous relationship with someone who could not have been more different, and I was devastated when that, too, fell apart. I learned the hard way that emotional insight allowed me to see some things, but another person’s true intent and commitment remained inscrutable.

After some initial tumult, the changes in me proved transformational at work. My ability to engage casual friends and strangers was enhanced. But with family and close friends, the results were more mixed. I found myself unsettled by absorbing the emotions of people I was close to, something that had never happened before. Strong emotional reactions welled up in me, and I showed feelings I had never expressed.

It took me five years to find a new balance and stability. In that time, my sense that I could see into people’s souls faded. Yet the experience left me forever changed. Before the T.M.S., discussions of emotions were like cruel taunts to me; it was as if someone were describing beautiful color to a person who saw in black and white. Then, in an instant, the scientists turned on color vision. Even though that vision faded, the memory of its full brilliance will remain with me always.

I’m married again, to someone who’s emotionally insightful. To my amazement, she became best friends with my first wife, and helped me reconnect with my son. She started a tradition of family dinners and gatherings, and brought new warmth into my life. Even more, she helped me become part of a web of emotional connectedness I’d never known before, and surely could not have known pre-T.M.S.

That really shines through in my relationship with my son. We had grown apart before the T.M.S. through a combination of his teenage rebellion and our mutual inability to read each other’s feelings. (My son is on the autism spectrum, too.) We joined the T.M.S. study together, and it became a powerful shared experience. Even as the T.M.S. effects pushed my ex-wife and me apart, they drew my son and me together. The T.M.S. also helped me understand my mother, in the last years of her life.

I’ve made new friends, and built a stronger business. And there’s something else: I’ve learned that the grass is not always greener when it comes to emotional vision. For much of my life, I’d imagined I was handicapped by emotional blindness. When that changed, seeing into other people was overwhelming. Becoming “typical” proved to be the thing that was truly crippling for me. Now I realize that my differences make me who I am — success and failure alike. I’d call that hard-won wisdom.

John Elder Robison is a consultant on autism and the author, most recently, of “Switched On: A Memoir of Brain Change and Emotional Awakening.”

If Strangers Talked to Everybody like They Talk to Writers

Last week, writer and tweeter extraordinaire Elizabeth McCracken tweeted this:

There is something unique about the way people talk to writers. Strangers seem very willing to offer career advice — “self-publishing is where the money is!” — literary advice — “People love vampires!” — or to oddly ask you to guess what work they’ve read in their life and if any of yours is among it. It got me thinking about what it would be like it people talked about other professions in this way.

“Ah, a middle school teacher? Have I met any of the students you’ve ever taught?”

“Cool, I always wanted to be a car salesmen. Maybe when I retire I’ll settle down and just work on selling that Buick I’ve had in my head for years.”

“Huh. A chef. Do people still eat food?”

“An accountant? Wow, I haven’t even looked at a number since high school.”

“You own a hardware shop? Nice! Do you sell tools with wood handles? People love wood handles, you should really sell tools with those.”

“So Chet tells me you’re a bartender. Would I have tasted any of the drinks you make?”

“News anchor? Okay here’s a news story I’ve been thinking about for years: the vice president slips into a vat of grape jelly. People would love that story, right? It’s yours! I’ll never have time to get away from work and break the story to a national audience myself.”

“Non-profit grant writer? Hmm. My 7-year-old niece is into non-profits. Do you write grants for any children’s non-profits? Maybe she’s read one of your grants.”

“Software programmer? Like, for actual computers sold in stores or just as a hobby?”

“Gastroenterologist? My aunt tried to be a gastroenterologist. Hard to make a living doing that! Hahaha!”

“Menswear designer for J. Crew? Interesting. Have you tried selling your clothes yourself on Etsy instead? I hear people are making millions self-designing on the internet these days.”

“You said a Wall Street banker? Interesting. Would I know any of the economies you ruined with borderline illegal practices?’

by Lincoln Michel

Stand Up and Fight