Archive for the 'Uncategorized' Category

24
Jul
15

Dear William, the traveling nurse

Dear William,

I’m writing this because chances are that I will never see you again. I have a strong desire to communicate to you and so, I write this and will publish it out into the universe in the hopes you’ll see it and read it. It’s the best I can do under the circumstances.

I do not have your last name and only a few identifying details. I was a patient at Mercy Hospital in Fort Smith, Arkansas and you were my nurse during my inpatient stay. It was the overnight shift of the 19th into the 20th of July, 2015... On the 4th floor general surgery wing. You told me you’re a traveling nurse—one who takes nursing jobs across the country because you have a child with special needs (like mine) and the income is more if you travel. You’re married. You call Nashville home. You have short, dark hair. A little gray at the temples. You are trim (Fit? Athletic build?). You seemed tall but I’m a short person so… may be of average height. I share these details only so I don’t forget them and so that you can recognize yourself. I want to thank you. From the deepest part of me. In general, I have come into contact with many nurses. Some I call friends. I was a patient to some. And I’ve met some fantastic nurses. Nurses who do their job, in kind, caring, and professional ways before. But dude. That night had me in tears I was in so much pain. From top to bottom. When EMS was called to my house, I felt like I was hanging on to my life. Holding a tiny thread. I was scared. I was scared my kids would be without their mother by the week’s end.

The night you were my nurse was actually my second, and last, night in hospital. You had told me the chances were I’d be in hospital a few days more. Who knows but I choose to believe that you helped heal me faster. *soft smile*… You were SO kind. So caring. So gentle. I cannot find words to express the tenderness you showed. The understanding in your eyes when I expressed fear for my children. Who would raise them if I’m gone? No one can do it better than me. I didn’t give full voice to that thought but you showed you understood perfectly.

With doctor’s orders, you helped take my pain away but it seemed to me that it was more than just the pain medication. I don’t know how to describe exactly what I mean because even now details are fuzzy. Remembering details has not been a strong suit of mine ever since a car accident I had on December 31, 1996. By the by, the man who hit the car I was in, head-on, was named Bill. He showed the same caring, kind, gentleness when he was blowing on my face to get the glass off of my eyes. My fantastical mindset wants to insist you’re the same man. What are the chances? Coincidence, I’m sure. But my writer’s mind wants to believe you’re the same man.

I am home now. Feeling better. It is because of you, and the other staff, at that Hospital. I just feel you were above exceptional in your care of me. You showed the same towards the other patients. Courtesy to your fellow co-workers. Respectful. You, Sir, are a wonderful human being and I just wanted you to know—someone noticed. It helped someone. It healed someone. Thank you is just not an adequate enough statement to express the gratitude I have. I wish for you many blessings in your future. You deserve them all. I think your wife and daughter should know what type of man their husband and father.

Thank you.

and these are my words….

17
Apr
15

Starting a weight loss journey today….

Heather_Johnson_Before_Collage

Way back when… I used to weigh 350 lbs. I went down to 150 lbs by eating only 3 pints of Ben and Jerry’s Chocolate Chip Cookie dough ice cream a day and on Sunday’s I ate winter soup. That was so not a healthy way to lose weight. Over the last 16 years, I’ve steadily, slowly, packed on the weight again. The contributing factors were many.

First, I gained 72 lbs while pregnant with my eldest son and was unable to lose the weight after I gave birth. I only gained a net 2 lbs with my second son’s pregnancy but after I gave birth to him, I gained another 30. I was 166 lbs when I confirmed my pregnancy with my eldest. By time my youngest was a year old, I was 240 lbs. I stayed that weight for about six years. When I began chemotherapy treatments, I started gaining weight rapidly because part of my chemo drugs was prednisone, a steroid. I jumped up to 298 and stayed there until 2014 when I started gaining weight again and added 30 lbs. I’m down a few pounds here in April of 2015 and weighed in two days ago at 313 lbs.

My doctor explained to me to that I am “metabolic efficient”. Meaning, my body will burn exactly what I take in. Great for maintaining weight… not so great for losing weight. I tried many different ways to lose weight over these years. I’ve tried different eating plans. I’ve tried exercising best I can. Doctor-supervised, physical therapist, nutritionist.. no matter what we tried, I either just didn’t lose anything or I gained weight.

I had a consultation with a general surgeon. I have a hiatal hernia and bad gall bladder. There is a surgical fix for a hernia that takes the stomach and staples it to the diaphragm. With my medical history, they decided that would not be a good option for me. Also, not being able to eat 3 times a day has had its impact on my weight. The hernia blocks food from passing into my stomach and small bowel for digestion. It just sits there and if I eat as often as I am supposed to, I clog up my esophagus and end up vomiting.

What I eat plays a rather larger part for me. I don’t like meat all that much nor veggies. I’m a pastatarian. Pasta and breads. That turns into stored fat on my belly. So, I have to make some BIG changes.

After the past six years, talking with various doctors and nutritionists and other professionals,  I have decided to have gastric bypass surgery– specifically the Roux en Y procedure. Because of my hernia, I am starting the post-surgical diet now. Two weeks before surgery, I will start an all liquid diet. My calories will be restricted to 800 a day (what I take in now). I’m to start walking 10 minutes a day and quit smoking. If I smoke, or even ingest second hand smoke, my surgery will be canceled. No refunds.

This is a whole program one has to go through. It starts with an initial consult with the surgeon. Then a brief consult with the surgery program director. Then a seminar. Then 3 appointments over 3 months with a nutritionist. And 3 appointments over 3 months with an exercise supervisor. A psychological assessment to make sure one is ready, willing and able to handle the life-long changes this surgery will create. THEN another consult with the surgeon and then the surgery gets scheduled. Then the surgery happens and regular follow ups for the rest of my life with the surgeon and my regular physician. I will take supplements for the rest of my life, too.

The hardest parts, for me, will be the not smoking and the diet changes. My regular physician who has had the same procedure done on himself said that after two years, my diet will resume to normal but that I just won’t eat the same quantities. So, I will be able to eat my yummy food again, one day. Just won’t be the same amounts. I can deal with that.

Because of my hernia issues, as I mentioned above, I am on the post-surgical diet. Also, it will help me get into the groove of all liquid diet I will need to be on 2weeks before the surgery. That is to shrink the liver to make the surgery easier to perform. Today, I had a peach protein shake for breakfast. I will have another for lunch. I will have half a can of prepared cream of celery soup. That is it. And I started my multi-vitamins.

The shake recipe is 8 oz. of  low-fat milk ,one serving of low calorie, low sugar yogurt, cup of ice, and a scoop of protein shake mix. I have found I do not like the chocolate one because I did not add the yogurt. I am going to try that one tomorrow with strawberry yogurt. If I STILL don’t like it, then I won’t us it anymore. I  do like the French vanilla.

Smelling the food the rest of my family eats is difficult. But not too hard to deal with. Keeping an eye on the prize. This weight loss will help so many of my health problems. I do not have diabetes but this surgery cures Type 2 in most patients who have it. It will help with my hypertension, osteoarthritis, other chronic pain issues like fibromyalgia. And on and on the list goes.

I’ll post some as I go along, at each step. this is going to be epic!

30
Dec
14

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,900 times in 2014. If it were a cable car, it would take about 32 trips to carry that many people.

Click here to see the complete report.

12
Nov
14

guilt and ability

I posted this yesterday on my Facebook. I decided to share again. But this time, on my blog so I won’t lose it. I only intended to write that I was enjoying my cup of coffee. 
 
So, am slowly waking up. Some days are so hard. I try not to vocalize it because then it’s hard for me to ignore and push past. I have such guilt inside over the things I don’t get done. I try and explain why to my kids. But it sounds like a broken record… I’m just as tired of saying it as they are of hearing it. I know they know. They intellectually understand.
My eldest, I think, has the hardest time with me limits. He remembers what it was like before… before all the sickness took root. Before the cancer, before the chemo and radiation, before I became who I am today. Before the chronic pain that can make the simple act of sitting up and breathing more excruciating than anything I’ve ever experienced–yes, even more painful that going head first through the windshield during a car accident.
I have such guilt when I ask for help. I ask for a cup of coffee… And I know it’s a simple thing but in the moment, I hurt too much to even stand up…never mind move. I should be able. I tell that to myself. I was able an hour ago. Why not now?
And the guilt I feel when I ask for bigger things.. Like unloading the dishwasher, cooking, laundry.. It’s immense. That was my job. Ever since I can remember, I have wanted to be a mom…a stay at home mom, if financially able…never wondered what if I’m not physically able. I should be able is what I tell myself.
And it’s not like it’s a fixed differently abled thing either. If I lacked a right arm…people could see why I could not shake their hand in the way of our customs. And it would be the same now as it is two hours from now… I still wouldn’t be able to shake your hand. If I could predict what I was unable to do at any given time…I think that might be better. Because then I could plan. Then I can make accommodation for it. But if it changes hour by hour or minute by minute, how do you? How does one plan for that? To stand up, intent on making supper for her kids, only to sink back down and try to hide the grimace of pain?
How does one sit there, realizing that here is another night the child will come out about 5 p.m. and ask “Aren’t you going to make supper?” How does one not feel so much guilt.. So much that she lashes out with a “Don’t rush me!” Not because the child asked for supper but because she’s scared that tonight the child will have to cook for himself? And feel that guilt. How can one plan for this when one doesn’t know when she will be able and when she won’t.
Make an appointment for a month from now; wake up and unable to go. The doctor only sees a flaky person costing them a missed appointment.. And so they drop me as a patient.
I am sorry that I am not the mother, the woman, the sister, the daughter, that I feel I was meant to be. I fight so hard not to be a burden to anyone… Do they see? Do they really understand? Was that an eye roll? Does he think I’m just being lazy? Or that I’m more into my show on T.V.?
Words really can’t express these feelings and they never truly go away. Words can’t really express the enormity of these feelings. Words cannot express how broken I truly feel. But I feel compelled to try and explain myself.
I fight with others when I perceive them trying to take away from me the chance to try for myself. Don’t assume I can’t unless I say I can’t. It must be confusing for them, as it is for me. Yesterday I wanted help navigating through life, needed an errand ran, an onion chopped. Today, though, I can do it! Don’t hover! Don’t walk behind me like I’m a toddler, learning how to walk, with your arms out, ready to catch me if I fall. Let me fall, darn it! Just be there to help pick me back up.
How can I make others understand what I don’t understand myself? I feel useless, unhelpful, ungrateful, unwanted, just…. Unable.
And then, I’m reminded. I’m reminded that it is because I feel that I am alive. I have a heart and it beats. I’ve been put here for a reason. Not sure what but don’t really need to know right now. And so while I may not live up to my expectations every day, I keep going. I keep trying and I keep pushing. The more I do for myself, the more I can do. Finding relief in laughter, in my sons, my sister, my family… God has blessed me. I have much to be grateful for, really. I still have a chance to live…and to love. And love….is the greatest of all. Isn’t it?
Maybe one day I can accept this new normal. Maybe one day I can even forgive myself and love myself, as I am today, right now, five minutes from now, tomorrow… Wherever I’m at on the able scale, maybe one day.
But just not today. Not yet. So, I’m going to take a sip of this coffee and be thankful I made the pot and cup for myself. That at this moment, as I finish these thoughts, all is possible. Including love of self. Love of me.
17
Jul
14

Reviewing the Sprint Neurodiversity ID Pack

Sprint recently released a package of apps known as Neurodiversity ID Pack. It is a group of 25 packs designed especially in mind for those with special needs. The apps are to be used by children and to help support their parents with apps and links to websites. This is a review of some of those apps. To view all available apps, please click here (http://www.sprint.com/sprintid). Sprint ID packs are free to download but certain apps are not free to use.

The apps are for individuals who are autistic, non-verbal, dyslexic, dyspraxic and/or other cognitive and neurological differences. The apps provide such things as tap to talk where someone can press a picture to give a predetermined phrase, or use multiple taps to form complete sentences such as “I want to go out for a piece of pizza.” The Talk to Tap app has “albums” that are downloaded via email and installed into the app. In these albums contain the sound files so that one can use an adult female or adult male or the children albums use a female child or male child voice files to speak the phrases attached to the pictures. Also, the choices available to tap change per album as adults will want to do things that children would not and vice versa. This app has received favorable reviews and ratings in the Google Play Store although there was one criticism: it is not customizable to a full extent. In other words, one cannot install their own pictures and phrases that they would use often. However, the app is free to use.

There are educational apps that are meant to improve math and reading skills and offers developmental games for children, K-12. The reviews are favorable in the Google Play Store and many parents enjoy having them available for keeping kids busy during rough times such as waiting in a doctor’s office waiting room. Parents like that the kids are playing games that with help with motor movements and learning new skills.

Thomas Johnson, age 15, is diagnosed with Autism Spectrum Disorder and several other neurlogical differences. He used the ID pack on an LG G2 andriod-based smart phone and tested the apps. He was displeased that all the pictures and games seemed geared towards pre-school aged children, even the “adult” albums had cartoon pictures rather than real pictures. However, he did like the text to speak app and several others. He said, “What’s good is that you can pick and choose which apps you like. Sprint is obviously trying to reach a broad audience with a single product, you’re not going to be able to please everyone with everything. So, I can use the ones I like and not use the ones I don’t.”

The apps were easy to install with one click and the ID interface was easy to use. Parents of special needs kids often complain about the costs of services and therapies and it is nice that even though some apps cost money, they are comparitively speaking, less expensive than others.

Sprint has partnered with several organizations to provide support links to parents of children with special needs. Included in the ID pack are several links to online resources and community support forums. All caregivers need a place they can turn to and Sprint offers that and more. The chosen organizations provide science-based information regarding many different types of special needs children and adults may face. One hopes that soon Sprint will develop apps specifically for adult autistics as children do not outgrow autism.

When Sprint first announced this release last month, the adult autistics in the community were excited for apps to use and quickly disappointed that the apps were mainly for children to use and only “support links” given for adults who were parents of children with autism.

The community of “autism organizations” often seem to miss out on an opportunity to cater to autistic adults. They often seem to think that either autistic children outgrow their autism or that the children do not mature into adults; they do, it just might take some of them longer to get there. It is my hope that the future improves for my children and myself.

Overall, I give this application pack a 4 out of 5 stars.

For more information, please visit the Sprint website (http://www.sprint.com)

11
May
14

Advocates Behaving Badly: Part 2

Just as before, last time I exposed a less-than-trustworthy “advocate”, this time following the publication of part one of this series, some folks have come forward with information regarding the person of interest. In this case, we’re talking about Debra Brink.

In case you missed it, here is the link to the first part

I tried to do a brief synopsis but there is no way to do that succinctly, so please just read part one if you haven’t already.

Now, for what came next:

db2

 

You will notice that she said that was the first step. The second second step was to have her committed. Well, this past week, Debra Brink tried that since calling the cops failed to work. APS called Melissa and told her that someone had reported Melissa for needing 24/7 care and needed to be in a facility. That did not work. At the same time, IHSS had been notified that Melissa’s current caregiver was doing things above and beyond what a caregiver is paid to do by IHSS (the organization in California that screens and pays for personal caregivers for the disabled). Also in the complaint is that Melissa is often taken advantage of and that is another reason she needed to be placed in a facility so that someone else can manage her money.

Since Debra Brink does not know this, PCAs are allowed to do extra tasks, on their non-IHSS hours, for their clients as “private pay.” That is not against their policy. So, Melissa and her caretaker were not doing anything wrong.

As you can see, Debra Brink followed up on her threats. That is so sad. That is so not what an advocate would be involved in. Why did she do this to Melissa? Because Melissa posted HER perceptions about Debra Brink and how Debra Brink’s involvement in HER life impacted Melissa. Melissa had every right to do so. If Debra Brink did not like what was being said about her, she should not have acted the way she did!

So, who is Debra Brink? As I mentioned above, there were folks coming out of the wood work to tell me. One person helped me with a bit of research on Debra Brink and said, “Did you find her radio interview? She sounds like a flake. No blame can be assigned on your parts for this… the radio interview might have caused you to tell Debra thanks but no thanks.”

Indeed, in many of her radio interviews, she goes on and on and on and on and talks over the hosts of the various shows. She cuts them off, she interrupts them and talks over them. It is PAINFUL to listen to her talk for me. However, I began to dig into her “public” life. I compared her claims on Facebook, to us in the group, her claims in radio shows, interviews, and the like. If we go on her word, she has been an advocate for twenty years. She began to do this work after she no longer worked for a living as a way to spend her time. She wanted to volunteer and the church work she was doing just wasn’t cutting it. She had more time on her hands once her kids began school. She claimed at one point to not know much about autism and being willing to learn. She said that she had a friend whose child was diagnosed and through that child knew SOMETHING about autism but not much. She later claimed to have two decades worth of experience advocating for both missing persons and those with autism. She claimed she dealt with “messy cases” and Melissa would be considered “messy”. I’m not sure how that would equate as she usually referred to child abductions by pedophiles as “messy cases” as well.

She also has claimed that when she graduated high school, she had college “training”. She did not need to then go on to college. She was “self taught” in all areas she needed to know. She spent time working at the company who made the 20-mule Borax, eventually “running the whole east coast”. She claimed experience working for a private ambulance company, insurance companies, law firms, and other administrative jobs. Six days before the birth of her first child, she decided that since she couldn’t commute anymore, she’d open her own business. What that business was/is, is not clear but it involved getting her own server, news website, and co-hosting radio shows. However, she was “too busy as an advocate” to make a success of it.

In a radio interview, she mentioned that her co-host was ill (in fact, he had been committed to a mental hospital) and she was “striking out on her own”. She had a website up and going but it was “still under construction”. At the time that part one of this series was published, that website was still “under construction”

4_3_14_UnderConstructionStill

Her co-host was Brian Ladd. According to his website, he was committed and diagnosed with multiple mental disorders which manifested in such a way that he had trouble discerning reality from his dreams and news reports. He had become so involved with the missing persons community and stories, that he suffered from a psychotic break. Say what you will about whether or not the man is psychic as he claims to be, that is not the point. Brian Ladd was involved with a missing person’s case involving another psychic, Ms. St. John, Debra also became involved as his “case admin” and co-host. She decided she would “put boots on the ground” and join in on that search “for the first time” and not doing what she usually does, as she put it: “running my mouth and pounding the keyboard.”

An insider of that search came to me via message on Facebook in the past month to tell me that when Debra Brink showed up to that search? She seemed drunk to the insider. The insider then went on to say that “She made websites for missing persons and refused to let family members have access and read any emails/tips that came in.” I’m not sure why Debra Brink would refuse to let the family members have the tips that came in. You would think she’d pass that information on to the family so they can give it to law enforcement. Perhaps, she was making up the fact she was getting tips at all. I do not know, of course. Perhaps she had a valid reason. I just can’t seem to think of one.

This insider also said that another searcher had been harassed by Debra Brink and consulted an attorney because of the way Debra Brink reacted. I do not know the cause that made Debra Brink upset as that was not shared with me. But this insider said that Debra Brink was “still up to old tricks” in reference to the harassment she read about on my first blog post.

Melissa has felt terrorized during this whole time. On April 22nd, when APS contacted Melissa Fields about the report on her being unable to live on her own, Melissa was very scared she was going to be committed. You might think that’s not a real fear to be worried about. However, in one of her interviews, Debra Brink relays a horrific story about a young lady who had swallowed some advil in a “suicide attempt.” This young lady was an adult. Debra Brink and one of her daughters took this young lady to the ER. Debra Brink did not like that they were not going to admit the young lady and in Debra’s words, “trumped the Network 180 lady”. Network 180 was an organization used by the staff at the ER for those with mental health issues. Debra appeared to relish in the telling of this story. It was long, drawn out and the host tried to cut her off at one point but Debra insisted on finishing this story. It took almost 45 minutes to tell the whole of it, including commercial breaks.

You can listen to the interview for yourself here: Vinny Eastwood shows

(scroll down to Jan 25th or use find function and type “Debra Brink” on above page.)

Vinny Eastwood is sponsered by Guerilla News Network.

So, Melissa heard first hand Debra Brink claiming power to get someone committed, even someone a physician and a mental health professional, did not feel was necessary to have committed. Was it necessary? I’m not sure. The young lady was an adult and should have been able to make that decision for herself, or by her physician and NOT have it made by Debra Brink, who admits to not having any medical degree.

So, here Debra Brink is, trying everything she can, though long-distance, to try and do the same to Melissa Fields. How is that advocating? I’d say that is advocates-behaving-badly!

Image of hack attempt

As you can see, we normally log in from “Fort Smith, AR” as we are close to that city. We are not actually IN that city but that is the closest big city Google recognizes.

Earlier this afternoon, after hearing/reading what Member B had to say about erasing my blogs, I became determined that I would NOT back down in this. I have done NOTHING wrong and that if Debra Brink did not like what was written here, she should have ought not done the things she had done. I went to Youtube to select a few videos (to share publicly on Facebook about not backing down) when I got a notice from Google that someone had tried to log-in and was prevented from doing so.

The person, according to my ISP (Internet Service Provider) customer service, was tracked back to someone on a mobile device who “pinged” on two towers, one in Grandville, MI and one in Grand Rapids, MI. Isn’t it strange? Now, neither is Grandville or Grand Rapids Debra Brink’s current residence. However, they are the biggest cities near hers.

What’s worse? My SON’S Youtube was the one that s/he had tried to hack. Not mine… my son’s. I am not sure how s/he got his account name. I do not have proof this was Debra Brink, at the moment I am writing this, just the preponderance of evidence. This is all I need in a civil court. At present, I plan on going Monday morning to my police department and filing a report about this as well. The police can go further than my ISP could with the tracking, according to my ISP.

For those who are currently unaware, my son, T, has mental health issues. He is diagnosed with oppositional defiance disorder, autism spectrum disorder-level 1 (which may change to social pragmatic disorder in the near future). He is also diagnosed with bipolar disorder with psychotic features. That means he has mood swings and sees/hears things (when he is depressed, usually) that are not there. He loses touch with reality. I do fear what she will try and do to my son and this is a real fear. I plan on filing a protection order, if necessary and if it is proven to be her that tried to hack my son’s account. I find it awfully suspicious that the person who tried to hack his account (the one logged in at the time) did so from the same general location that Debra Brink resides in. Very suspicious, indeed. And if my suspicions are proved correct, nothing will stop me from protecting my sons and myself from her. However, I will not back down. My son has stated he knows no one else online or offline from that area. I am not aware of anyone else that I know of that resides in that general location, either. Certainly, no one with a motive to try and hack into an account. Remember how much Debra Brink loved to brag about her computer skills!

Remember my mention of Brian Ladd? Well, Debra Brink has also been accused of being the reason he had his mental break down in 2008 or 2009.  He was doing daily shows/predicitions on these missing person cases (and yes, some were “messy”). He wanted to slow down and only do a once a week show, according to this source. Debra Brink, a person alleges, told Brian that he could not do that. He HAD to continue with the daily shows. That was how they would get to be “viral”. The person alleges it was that constant bombardment from Debra Brink that led to Brian’s breakdown. After seeing how she has treated Melissa Fields, I can believe it! I do not know if Debra Brink really had any influence on Mr. Ladd’s mental state and I have not contacted Brian Ladd for any comment directly. This person also alleges that Debra Brink stated, when told of Mr. Ladd’s deteriorating state of mind, “There’s nothing wrong with him. He’s just faking.” She was very callous sounding, it was alleged. This person, when asked for proof of this conversation, did not put any forth. She stated that she did not save that conversation. She said she’d have someone else get in touch with me, if she could get that person to do so. However, that person, at the time of this writing, has not done so. I have not pressed the issue as it was told to me that this person is so terrified of Debra Brink, she had to get a protective order against her. Again, I have not seen a protective order myself. I am just stating what I was told.

Brian Ladd makes no mention of Debra Brink as the reason he collapsed, in the video, on his “about me” page of his site (linked above). He said he was diagnosed as “schizophrenic”. He does not believe this to be true as it was not onset in his 20s. He felt he “over did it”. He closed the portions of missing persons cases, etc. as of 2012. It appears he may be back at trying his hand at missing persons again. He fought his way back from this collapse. I am happy to hear that for his sake.

Just for the sake of education, it is not only someone in their 20s who can become schizophrenic. It is rare for anyone under the age of 10 (although there is a famous girl named January who has been diagnosed as such who was under the age of 10 at diagnosis). You can get more information at this website (http://www.schizophrenia.com/szfacts.htm#). For instance, it is more common for women to have an onset of schizophrenia to start in their 30s.

So, after doing this research and getting people coming forward about their experiences with Debra Brink, Melissa Fields is feeling terrorized, terrified, and still is not going to back down from exercising her first amendment rights. Neither am I.

I wanted this blog post to focus on “warning signs” and “red flags” when searching out advocates. However, it has been taken up by all this new information on Debra Brink. I will just, instead, leave you with a link to an article I wrote several years ago, after I had dealt with an “advocate” who acted much in the same vein as Debra Brink did. So much so, that their typing styles were even the same! (insert link for article on MR’s continued harassment). No wonder she bothered me so much from the beginning. She acted just like him. I do hope this is the last blog post I have to write about Debra Brink. I hope she realizes that she cannot bully me into silence.

You see, Member B relayed Debra Brink’s message: She will not stop until I take down my blog about her. She needs to realize that **I** will not stop until SHE stops her harassment. Because if she stops her harassment, I will have nothing to write about!

And starting from now on, I will use InstantCheckMate.com for background checks of anymore advocates!

LINK ON LAY PERSON ADVOCATES: http://www.examiner.com/article/lay-person-advocates-can-be-a-huge-help-to-parents

Transcript of an interview I gave and where some red flags were mentioned: http://transcribery.wordpress.com/2010/08/29/interview-w-heather-sedlock-of-advocates-against-fraud-in-advocacy/

(Should have remembered this)

29
Mar
14

Autism: Puzzles and Rainbows

I originally wrote this piece in 2010 and a revised excerpt appeared on The Thinking Person’s Guide To Autism’s website in June of that same year. However, with current discussions in the autism community, the time may have come for me to publish this, again. Here it is, in its entirety:

 

There are two metaphors used within the autism community to express polar opposite views of living with autism. These metaphors shape thoughts and beliefs about autism and influence the actions of individuals. The two metaphors are: “autism is a puzzle” and “autism is a rainbow.” The majority of those in the autism community fall within the middle of these two extreme views of autism.

These metaphors form a cyclical relationship in which the metaphors influence the thoughts, beliefs, and actions of those who ascribe to the metaphorical concept and the thoughts, beliefs and actions then influence the use of the metaphors. There are six areas where the influence of these metaphors can be seen: research, day-to-day life, future planning, treatment/accommodation, conversation topics, organizations and groups that individuals create and join.

Before one can appreciate the metaphor’s influence on the community, a definition of autism is necessary. Autism is a pervasive developmental disorder characterized by   “poor social interaction (this can include lack of eye contact, and social exchange, both verbal and non-verbal); language delay (expressive language is equally important as receptive language; repetitive phrases and inability to initiate dialog or support it); obsessive behavior (this can include inflexibility, repetitive physical movement and fixation on objects).” (Hausman Morris, para. 3).

Autism is a puzzle:

The metaphor “autism is a puzzle” represents the views of those within the autism community who desire a cure, sometimes referred to as “curbies.” The belief that autism is a puzzle shows that these individuals believe that autism is something that needs to be solved, placing the various pieces together to make a complete picture. These individuals often focus on children with autism and either ignore the fact that there are adults with autism or honestly believe that adults with autism do not exist.

The types of research conducted or supported by Curbies are those designed to find the “missing pieces” needed to solve the “autism puzzle.” For instance, research into causes of autism is very important to this community camp because if one knows what causes autism (which creates holes in the puzzle), one can find what is needed to fill in the holes. If one can find out whom or what “stole” the “pieces,” he or she can begin working on putting those pieces back into the puzzle making day-to-day life better.

Blogs, articles and other written pieces that focus on the day-to-day life of those living with autism in this camp tend to focus on the negative aspects of autism. The blogs focus on what a hardship autism is, usually for the parent or other caretakers, including all the things that are missing in life. For example, the mother who cannot just hop into a car and do shopping errands because her son is having sensory issues and may become overwhelmed and have a meltdown. The post is usually focused on the parent’s frustration and other negative emotions, with very little thought given to how the autistic individual felt about the experience. The parent also expresses doubt about continuing to live life in this manner.

There does not appear to be much from this side of the autism community for future planning. That could be explained with the metaphor’s influence. Once the puzzle is solved, there is no need for specialized planning for a child who has autism. Or perhaps the future does not exist and is considered another “missing piece.”

The treatment aspect of this side focuses on the eradication of symptoms. This group is more likely to consider such treatments as Chelation (a medical therapy used to treat high levels of metal toxicity with the risk of death (Sedlock, para. 35), oxygen hyperbaric chambers and other risky measures. The reason is the belief that those treatments will “cure” autism and solve the puzzle altogether.

The conversations that take place on social media websites (and in living rooms) focus on the frustrating life with autism. The conversations discuss what the missing pieces might be. It documents the avenues pursued and money spent to find the missing pieces that will complete their life and make them “whole” again.

An organization that fully embraces this metaphorical concept is Autism Speaks. it even uses a puzzle piece as its logo. The research it funds primarily focuses on cause and treatments that will erase autism and its symptoms. The members of Autism Speaks and the parents, who support the organization, subscribe to this metaphorical belief that autism is a puzzle to be solved. Although, there are parents out there who use the puzzle piece logo as only a means of identifying other families whose lives are affected by autism.

Autism is a rainbow:

The other side of this discussion expresses the view “autism is a rainbow.” The rainbow is an object of beauty, a thing to be seen and appreciated. There is nothing wrong with a rainbow. This metaphor is often expressed in the thoughts, beliefs and actions of those in this autism community group. The spectrum of colors in a rainbow also represents the many levels of functioning that those with autism have.

The types of research supported by this group usually focuses on treatments into technology that will assist those individuals with autism to function in such a way that enhances their life, not “fix” it. For example, the research by this camp would, metaphorically speaking, develop a new window cleaner, so a person can look more clearly at the rainbow through the window.  Literally speaking, the research into technology might create a new device for communication purposes for those who are non-verbal because of the autism.

The focus of day-to-day life is often on the little and big achievements by those who have autism. The focus is on the “good” side of autism. A rainbow is comprised of a spectrum of bright colors and people in this group often view the day-to-day activities as bright experiences. They do acknowledge hard times, some of the time, but the main message is about the progress made by adults and children on the autism spectrum and less about the dark side. Some of the extreme members of this group refuse to speak about or listen to anyone or anything that sheds a negative light in any way on autism. The persons are often militant in this and will disassociate themselves from “friends” in online community forums if a person should ever type a negative word about autism.

Parents and caretakers often discuss future-planning in this group. The options discussed include trust funds (in case person is unable to work), services needed to support, therapy and so forth so that the individual can function just as they are. Some in this group also include education and vocational skills training, as well. Because a rainbow is complete, there is nothing to add to it, but other things come together to highlight it or appreciate its innate beauty.

Since rainbows are to be admired as is, treatment philosophies focus on technology and devices that assist a person, minimize or eradicate only the negative aspects of autism. To represent this metaphorically, a treatment could be considered wind. If wind were to blow, the rain clouds move on, and a rainbow appears. This is not reflective that this group necessarily believes there are negative sides to the individual with autism or even autism itself. It is how others view autism that would be considered a “rain cloud.”  So the treatments would include awareness and self-advocacy so that individuals with autism can “educate” the world about how terrific having autism is.

Conversations on social media websites reflect this metaphor as well. Rather than focusing on what’s missing, the topics are about what’s there. The conversations are about how those with autism feel and experience life. The conversations are about acceptance, by both those with autism and from the parent’s experiences coming to a place of acceptance. This is expressed in the metaphor by the “brightness” or positivity, which the rainbow represents. Since a rainbow is a thing to be admired, the conversations by this group focus around the admirable aspects of life with autism.

Organizations exist for this group as well. ASAN (Autistic Self Advocacy Network) is the most well-known among them. However well the rainbow represents this side of the community, a rainbow is not often used as a logo or symbol of pride because another community uses the spectrum colors in a rainbow to represent their pride. That group is the Gay, Lesbian, Bisexual and Transgender community and could cause confusion. Despite that, the metaphor persists and continues to influence and manifest within the groups’ thoughts, beliefs and actions.There are some groups that use the spectrum’s colors within their logos, but not in the shape of a rainbow and the colors might be slightly different, such as darker or more pastel than those that are usually used in a rainbow representation.

The two metaphors for autism, “autism is a puzzle” and “autism is a rainbow,” influence the thoughts, beliefs, and actions within the autism community in vastly different groups. The differences that are represented in the six areas discussed show the considerable difference between the two metaphors and the impact each has for the different groups. It is a cyclical relationship because the metaphor reinforces the beliefs and thoughts which spur action which in turn develops a support for the metaphor to express those thoughts and beliefs.

 

 

Works Cited

Hausman Morris, Robin. “What is Autism, part one.” Examiner.com. Web. April 18, 2010.

Sedlock, Heather E. “How Do I Treat My Child’s Autism?” Examiner.com. December 14, 2009. Web. April 18, 2010.




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