Susan Senator

Because I am sometimes viewed as a resource for others, (me???) I am posting this for your use when you go away from your kids (you’d better try, if I’m going, you can go!)

(Note, just because I have done everything that needs to be done — including hiring a buddy for Nat halfway through, to give our respite worker a break and to guarantee Nat some fun — it does not mean I feel good at all about going. I have had dreams about killers, etc., that my boys were in danger. 🙁
But I believe that once I am at the hotel, on the ground safely, and I’ve called into the boys, I might, just might, be able to relax ????? with Ned???????? really????????)

So here’s what I’ve done to prepare for my vacation away from the boys, aside from all laundry, and buying all favorite foods:

…And I typed up this note for our respite person, plus all pertinent phone numbers, plus our itinerary:

Hi!
In case I don’t have time to say all this!
Also, could you get here 5:30 a.m.? Yikes, it’s early but I’m afraid we’ll need some time, I don’t know what Logan will be like.

In the morning:
Nat gets up first. Dresses and comes down and sits on the white couch. Sillytalk is fine, but running around and muttering to himself kind of quickly means he’s anxious.
***If he’s anxious, it’s probably because there is an outdoor light on somewhere. Our neighbors are used to our calling and asking them to shut their outdoor light during the day for Nat. They love him! You can call M, our neighbor in the mauve house, on XXX St, and she will turn it off. XXXXX is the neighbor in the tall white house bordering our driveway (and M’s) and he will also turn it off or tell you where to turn it off (or I will before we go). Numbers on blackboard. Remind him that the lights will go off soon.
***It might be because Max and Ben are still upstairs. You can remind him that Max and Ben will eat their breakfast when they come down. Max will have cereal, so will Ben. Nat likes to repeat what everyone is eating just because he likes to. It’s kind of a conversation with him, so if you can, you can even offer new information about breakfast, like, “I like to have toast. So I’m going to have toast, Nat.” He’ll like that Any time he is moderately anxious and talking about other people’s routines, you can offer information about them, engage him in talking about it, and he likes that.

(If you can’t remedy the lights, he might have to get a little screamy. The best thing to do is to completely ignore so it blows over, even if he is biting his arm. Ignoring is the only way that the escalation slows down, once he gets to that point. He gets more upset if you get upset. Try to gently distract him with a task (empty dishwasher silverware) or a video. I would say, “Nat, you can watch a video.” or “I feel like watching Sleeping Beauty, you want to?”)

When Nat gets screamy, Ben hides in his room. That is probably okay. Better than if Ben snaps back at him! Just keep all of you safe.

(If he seems very very anxious for a long period of time, in extreme situation, God forbid, give him half tablet of the clonipin in bottle over sink. It is a sedative). You can page Dr. M if you have questions, phone number in blue pills box.

Nat could have a bagel or dry cereal (no milk). He only needs a little help prying the frozen bagel apart. He can do the rest.

Ben and Max get their own cereal. If Ben asks for a bagel or bacon, that’s fine.

Lunchtime:
I like them each to have a piece of fruit (clementines are easy). Nat likes the dark red kidney beans, 1/2 a can a day. Rinse them in the colander to get the liquid off. He will take his own spice (a lot!). Save the other 1/2 in a tupperware container (bottom middle drawer in island).
Ben could have Cabot white cheddar (not half-fat!) with crackers, or green apple with creamy peanut butter.
Max will take his own.
They all like strawberries with sugar.
Any snacks they want, just monitor Nat’s cookie intake.

Nat has meds in Evening slot at around 4.

Dinnertime:
You could order pizza from Pizza Stop. They deliver. They know us. Nat and Ben share a large pepperoni. Nat does not eat the cheese, it’s okay. He eats a ton of pizza! Ben only has like one piece. Max has most of a plain large. Maybe carrot sticks for them, too.

Day two dinnertime: 2 beef franks for Max, roasted at 350 hardly at all; 2 turkey franks for Ben, same. 2 chorizo sausage for Nat. Pasta with butter, carrots.

Showertime for Nat, he is independent with this.

Usual bedtime routine.

A Merry Lightless Christmas
–Attributed to Nat and written with love and understanding and a little devilish humor, by me

Have yourself a Merry lightless Christmas
Shut that outdoor light
Cause it’s hard for me to keep it out of sight

Have yourself a Merry lightless Christmas
Though right now, I’m screamin’
When this pic was taken I was really beamin’

Here we are as in everyday
When your light is on, I rant.
Faithful parents who are dear to me
Say, “Nat Let it Be!”
But I can’t.

Through the years, I’ve learned to keep it together
As my neurons allow.
But your stupid light is making me have a cow!
So have yourself a Merry Lightless Christmas… NOW!

Good
Bought Nat some winter boots so now they all have them
Bought Austin Powers 1 so can watch something with whole family
Made chocolate sprinkle cookies with Nat
Did not overeat chocolate sprinkle cookies
Was good to self even though bloated (not sure this one counts)
Supposed to go with Lisa to Middle East tonight
Bought pretty J Crew coat
Found great restaurant to go to in San Juan
Have a dinner plan for tonight
Worked a little on Dirt Manuscript

Bad
Blew off last bellydance class (for me, not Baby Bellies)
Forgot important appointment while baking with Nat
Had to buy groceries day before Christmas Eve
People really whacked day before Christmas Eve — either way too nice or too mean
Pretty J Crew coat impractical, bought instead of lumpy warm ski jacket for me
Hair atrocious — blew off salon appointment — will look ugly at Middle East
Might not want to go to the Middle East tonight — getting winter agrophobia/intertia
Max not here
Sister-in-law not coming to Christmas
Have 220 pages left to edit of Dirt Manuscript

Lots of dreams, stuffed up nose, and the feeling that I didn’t actually sleep, but only effected some semblance of it. I have vacuumed down two mugs of half-caf already (it has to be half-caf because I like to drink so much of it) and my mind is ticking. I am taking in the day, gathering it at its soft white edges and trying to find its shape.

Maybe I can get the boys outside to sled. I really want to. We can actually sled in our yard, because of the gentle hill that starts at the neighbors’ line. We never leveled our lawn; no fancy grading here, I guess we failed in our landscape-perfection. But I love the slope and all the mature and overgrown spots that give the yard a real character, some texture and natural definition. There’s even a border of thick shrubs and low trees blocking us from the side street (we’re on a corner lot), that form a nice barrier when the sledding is particularly fast.

In my “sleep,” I dreamed I had volunteered at some town festival to bellydance. Only when it came time to go on, I could not decide which costume to wear. The real reason, I finally admitted to someone — Ned? My father? (What would Freud say about that question??) — that I did not want to dance in public. The person made me feel like that was okay. I had had that conversation with Ned just yesterday, telling him I really had no desire to dance for strangers in a restaurant, but that I really did want to be good enough to dance for friends. Right now, it feels just right: dancing for Ned and Nat, and for my Baby Bellies. (Last night I felt so bloated, though, that I just danced upstairs in my room so no one could see, and then I felt much better.)

In another dream, a neighbor who doesn’t like me — local politics, you shouldn’t know from it — came to my door to wish me a happy holiday, and I was so happy to see her. She was all in gray. That’s all there was.

Tonight I have some beautiful filet mignon I am going to try not to ruin so that the boys can taste really really good steak. I also bought potato knishes and challah, just because they like that stuff so much. I’m going to try tiny nibbles, as opposed to the Atkins thing, because more and more I feel like the Atkins thing is so crazy and unhealthy. (I shouldn’t eat a clementine? Or a carrot? How stupid is that?) Plus, obviously I’m not getting any thinner. But maybe that’s because of all the chocolate gifts that have found their way into my house. I can resist pasta, bread, rice, potatoes, but I cannot resist chocolate.

Tomorrow is Christmas Eve and of course we have nothing planned. For all of you who do, I hope it is a wonderful, beautiful, healthy holiday. For those of you like me, I wish you fun and happiness, too! Maybe Chinese food and a movie!

There are several excellent efforts afoot to put the brakes on places like the Judge Rotenberg Center in Canton that use aversive techniques. I am contemplating a petition of my own, that would specifically address the JRC and go to my Governor and Board of Education, and to the public hearing on January 16 (see below). More to come on this in upcoming days.

Several different Massachusetts state senators and representatives have filed bills like the following. Hearings are January 16 at the State House, I believe. I borrowed the information below from the ARC of Massachusetts website, an excellent resource for this issue and much more.

H109 – An Act to Ensure the Humane Treatment of Disabled Persons*

This bill, filed in various iterations for the last 20 years, would ban painful aversive therapy in Massachusetts. Filed by Rep. Barbara L’Italien. Referred to Joint Committee on Children, Families and Persons with Disabilities. Public hearing scheduled for January 16, 2008, in room A2 and will begin at 10:30 a.m.

A Call for Ethical and Unprejudiced Leadership and Practice in the Field
of Psychology

An Autism & Mental Health Community Letter

October 10, 2007

This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 “Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment” (hereafter referred to as 2006 Resolution), and the 2007 “Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment” and Its Application to Individuals Defined in the United States Code as “Enemy Combatants”” (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged “Enemy Combatants,” or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.

Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.

The use of the phrase “effective treatment,” does not make such techniques humane or acceptable. Furthermore, attempting to justify them as “treatments” of “last resort” may not be completely accurate. It has been clearly demonstrated that positive behavioral approaches, based on a careful analysis of the functions dangerous or disruptive behaviors may be serving are as effective and more enduring than behavior change techniques based on pain and fear. JRC uses a device that they call the Graduated Electronic Decelerator (GED), to deliver painful electric shocks. Reporters, legislators and others who have experienced the 2-second shock from this device describe it as incredibly painful. A report from the New York State Educational Department noted that JRC was not only using electric shock for dangerous and self-injurious behaviors but also for behaviors that are benign or idiosyncratic such as “nagging, swearing and failure to maintain a neat appearance,” or “slouching in a chair.” The director of the Judge Rotenberg Center testified at a legislative hearing that one student received 5,300 electric shocks in one day. In his testimony, he stated that over a 24-hour period, this student, a teenager who weighed only 52 pounds, was subjected to an average of one shock every 16 seconds. During some periods, the student was automatically shocked every second if he lifted his hand off a paddle. A copy of the New York State Report can be found HERE: http://boston.com/news/daily/15/school_report.pdf and a myriad of additional information on the school and its practices can be found by googling the Judge Rotenberg Center.

Proponents of behaviorism have voiced their opposition to these practices. Although the Director of the Judge Rotenberg Center often defends his practices by stating that he was trained by B. F. Skinner, Dr. Skinner made it very clear that he did not condone such practices. At the age of 83, he was interviewed by Daniel Goleman of the New York Times. In an article published August 25^th, 1987, titled, “Embattled Giant Of Psychology Speaks His Mind,” B. F. Skinner’s view is stated as–“The use of punishment is another issue Dr. Skinner still feels impassioned about. He is an ardent opponent of the use of punishment, such as spanking, or using ”aversives” -such as pinches and shocks – with autistic children. ”What’s wrong with punishments is that they work immediately, but give no long-term results,” Dr. Skinner said. ”The responses to punishment are either the urge to escape, to counterattack or a stubborn apathy. These are the bad effects you get in prisons or schools, or wherever punishments are used.” The complete article can be viewed HERE: http://query.nytimes.com/gst/fullpage.html?res=9B0DE3D6143CF936A1575BC0A961948260&sec;=health&spon;=&pagewanted;=print

The 1965 experimental research of O. Ivar Lovaas, Benson Schaeffer, and James Q. Simmons, conducted at the University of California, Los Angeles, concluded that electric shock applications did not have enduring effectiveness. In conclusion, they questioned the need for shocking children with Autism by stating, “A basic question, then, is whether it is necessary to employ shock in accomplishing such an end or whether less drastic methods might suffice.” (Journal Of Experimental Research in Personality 1, 99-109 (1965))

A recent Mother Jones article about this institution began like this, “Rob Santana awoke terrified. He’d had that dream again, the one where silver wires ran under his shirt and into his pants, connecting to electrodes attached to his limbs and torso. Adults armed with surveillance cameras and remote-control activators watched his every move. One press of a button, and there was no telling where the shock would hit—his arm or leg or, worse, his stomach. All Rob knew was that the pain would be intense.”(Mother Jones, August 20, 2007).

A horror from the Abu Ghraib prison scandal? No, torture carried out in the name of treatment, right here in the State of Massachusetts, against the most vulnerable of our young people — and designed and implemented by Psychologists.

It is additionally noted that programs that are built around scientific knowledge and principles will generally welcome peer review and a continual improvement process. Currently and historically, JRC practices are remarkably deficient in these areas. As leaders in the field of psychology, and as professionals who are intolerant of torture, APA has an opportunity, if not an obligation, to demonstrate leadership in this matter. Please consider the following facts and arguments.

Section 1 of the American Psychological Association Code of Ethics, creates a standard of excellence in regards to the personal accountability of psychologists to their Code of Ethics. It also establishes a means for resolving professional ethical issues between psychologists and with organizations with which Psychologists may be affiliated.

Sub-Section 1.05 of the Code of Ethics covers the topic of Reporting Ethical Violations. This sub-section related to reporting, places a grave responsibility upon APA members to report apparent ethical violations that have “substantially harmed or are likely to substantially harm a person or organization.” This reporting “may include referral to state or national committees on professional ethics, to state licensing boards, or to the appropriate institutional authorities.”

Within the 2007 Reaffirmation, reference is made to the 2006 Resolution, stating emphatically that it is “a comprehensive and foundational position applicable to all individuals, in all settings and in all contexts without exception.” We are in agreement with this position.

We are pleading with APA psychologists, and all psychologists who independently and voluntarily follow the APA Code of Ethics, to consider that the 2006 Resolution is inclusive of all human beings. We ask that it be applied toward those who are receiving treatment/services related to symptoms associated with autism, developmental differences, and mental health challenges, including such that may cause or contribute to self-injurious behavior. This letter is an earnest appeal to APA leadership and all professionals in the field of psychology to demonstrate ethical practices and adhere to the principles of the 2006 Resolution and the 2007 Reaffirmation in opposing the use of skin-shock and food deprivation that are currently being administered as “treatment” for self-injurious behavior, aggressive behavior, and other behaviors that are being considered as precursors. Skin-shock or food deprivation under any other context, or being administered to any other population segment would be considered an inhumane form of punishment that in reality is truly torture. According to the 2006 Resolution, there can be no exception for this type of degrading treatment.

Although there are some children and young adults who are able to communicate how they have been “substantially harmed by a person or organization,” there are many others who are unable to do so. Even those young people with the ability to communicate how they are being harmed are virtually unheard. Regardless of the individual’s ability to communicate and describe torture and its physical, mental and emotional effect upon them, this type of “treatment,” is still inherently wrong. Is it not the r
esponsibility of a professional or any human being to take action when they are personally aware of acts that are inhumane and degrading forms of torture?

At the JRC this “treatment” is being authorized under court order. While Judges may have extensive expertise within the framework of law, they are reliant upon the testimony of experts (in these cases, Psychologists) to assist them in making decisions. Experts within the field of psychology need to see an example of leadership from organizations such as APA. Good leadership provides guidance and constraints in all areas that are conducive to professionalism and best practices.

In conclusion, we are respectfully appealing to APA members and leadership on the basis of professionalism and unprejudiced application of your own code of ethics, and consistent with your 2006 Resolution and 2007 Reaffirmation, to formally and specifically declare your position regarding the use of skin-shock “treatments,” food deprivation, and any other aversives that inflict pain or deprive basic human rights at JRC or elsewhere. We are calling upon APA members to apply the Code which condemns the treatment that is currently taking place at JRC.

We respectfully request that the APA send this letter to its members, post it on their website and/or publish it in a newsletter or other publication that reaches its full membership. We request that the APA as a professional organization, and as professional individuals actively and vociferously advocate for best practices while opposing that which is torture. We furthermore request that the APA, as an organization, make a formal and specific declaration of its stance in this matter and exercise appropriate discipline, thereby demonstrating that the Code of Ethics will be applied without prejudice. Your example in this will be a voice of hope for those who have been locked away, subjected to daily torture and unseen and unheard for too long.

Written and Presented by: Derrick Jeffries (Person with Asperger’s Syndrome) and Nancy Weiss (Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for Disabilities Studies, University of Delaware)

The following individuals and organizations endorse this message:

1. Bernard Cooney, Ph.D.,Assistant Professor Sp. Ed.
Le Moyne College, Education Department, Syracuse, NY

2. Stephen Drake,Research Analyst
http://notdeadyetnewscommentary.blogspot.com/

3. Not Dead Yet, Advocacy Organization
Forest Park, IL

4. Suzanne M. Swindell, M.S.Ed.
Resource Teacher, Office of Sp. Ed.
Baltimore County Public Schools

5. Lori Noto, University of Bridgeport, Bridgeport, CT

6. Strengthening Our System, Inc., Human Services Agency
Floyd, VA

7. Rita B. Thuot, Director
Gaston Residential Services, Non-Profit Service Provider

8. Mary C. Cerreto, Ph.D.

9. APA Member, Associate Professor of Family Medicine
Boston University Medical Center

10. Douglas Biklen,Dean and Professor
School of Education, Syracuse University

11. Debbie Gilmer, M.Ed.,Associate Director
Maine Support Network,Western Maine Partnership, UMF

12. Kim McConaughy M.S., Behavior Analyst
State of Minnesota, Community Support Services

13. Debra Rezendes,Virginia Tech Autism Clinic

14. Amy Wrenn

15. Greg Scott

16. Kate Dempsey

17. Tonda S. Stillwell
Gastonia, NC

18. Diane Coleman, President
Not Dead Yet

19. Linda M. Bambara, Ed.D.
Professor of Special Education
Department of Education and Human Services, Lehigh University, Bethlehem, PA

20. Timothy P. Knoster Ed.D.

21. Colleen Horton, Parent
Austin, TX

22. Sheila Collector, Behavior Specialist
Dept of Special Education, Howard County Public Schools

23. Sondra Williams, Person with Autism, Parent
Ohio

24. Susan Fitzmaurice, Parent, Disability Advocate
http://disabledsoapbox.blogspot.com/2007/10/call-for-ethical-and-unprejudiced.html
IDEAAS

25. Teddy Fitzmaurice, Self-Advocate, Person with Down Syndrome
Teddy’s Ts

26. Lou Brown, Professor Emeritus
University of Wisconsin

27. Howard Renensland, Concerned Citizen

28. Cheryl Trommater, Advocate

29. Alison Hymes, M.S.
Psychiatric Survivor and Advocate
http://hymes.wordpress.com/2007/10/13/petition-the-american-psychological-association-to-ban-torture-against-people-with-disabilities/
Degree in Counseling Psychology

30. Adapt Montana
Disability Rights Group

31. Not Dead Yet, Montana
Advocacy Organization

32. Marsha Katz, Person with a Disability, Family Member, Concerned Citizen
State Organizer for Adapt Montana and Not Dead Yet, Montana

33. Kitsune J Scott, Concerned Citizen
Portland, OR

34. Mike Stanton, Parent, Member of the National Autistic Society
http://mikestanton.wordpress.com/
U.K.

35. Mary Johnson, Disability Rights Advocate, Author of Disability Rights Books
Advocado Press

36. Kevin Leitch
http://www.leftbrainrightbrain.co.uk – Autism News and Opinion
U.K.

37. Jamison Dupree, Person with Muscular Dystrophy, Concerned Citizen
Mobile, Alabama

38. Janet Conklin, Autism Specialist, Lane ESD
Eugene, OR

39. Roy Probeyahn
South Manor, N.Y.

40. Ragged Edge Online
Disability Rights Website

41. Advocado Press
Disability Rights Publications

42. Hugh Sheridan, Parent of Autistic Child
Needham, MA

43. Joan Sheridan, Parent of Autistic Child
Needham, MA

44. D’Arcy Sheridan, Autistic Person
Needham, MA

45. Sandra Weiss Knepp, MA,Executive Director
Bloomin’ Youth, Growing Independence in Youth with Autism

46. Samuel J. Ashley

47. Ellen Ewing, Service Coordinator/Family Consultant / Parent of a Child with Developmental Disabilities
WIDE HORIZONS – A Family Support Program
Yamhill County, OR Developmental Disabilities

48. Richard J Pratt, Executive Director
Transitional Living Services of Onon
daga County, Inc., NY

49. Anne Carpenter, Person with Autism

50. Beth Mathis, Concerned Citizen

51. Dan Kennedy, CEO
Human Life of Washington

52. Dr. Sally Rogow

53. Human Life of Washington
Bellevue, WA

54. Center for Life Principles
A Project of Human Life Ed. Foundation

55. Mary E. Donovan
No. Easton, MA

56. Ironsides

57. Donna Libby, Lane Regional Autism Specialist
Oregon

58. The ARC of the United States
Authorized by Sue Swenson (CEO)

59. The Autism National Committee (Autcom)
Dedicated to “Social Justice for All Citizens with Autism”
Authorized by Sharisa Kochmeister (President)

60. Sharisa Kochmeister, BA Sociology/ Psychology
Grad. Denver Univ., 2004, former user of facilitated communication, current user of augmentative communication; former victim, current victor
The Autism National Committee (President)

61. Phil Schwarz
Director, Autism National Committee, Director, Massachusetts Chapter, Autism Society of America, Vice President, Asperger’s Association of New England

62. Gerald (Jerry) Newport
Author/Advocate with Asperger Syndrome
http://www.realmozart-whale.com/ Co-Author, Mozart and the Whale, and other books

63. Margo A. Williams
Director, Autism National Committee, Treasurer, Autism Society of Washtenaw, Mother, to wonderful child with autism

64. Denise Fletcher
Psychiatric Survivor

65. Sandra McClennen, Ph.D.
Licensed Psychologist in Michigan and CPQ by ASPPB, Vice-President, Autism National Committee

66. Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project

67. Rikkii Clarent, School Psychologist

68. Karen J. Zimbrich, M.Ed., Life Member of TASH
Resident of Massachusetts,

69. Nancy Donahoe, Person with Autism

70. Mira Davis-Kelly
The Autism Acceptance Project

71. The Autism Acceptance Project
Advocacy Organization, Promoting Acceptance and Accommodations for People with Autism.
Approved by Estee Klar-Wolford & Mira Davis-Kelly

72. Kristina Chew, Ph.D.,Assistant Professor of Classics, Co-director, Honors Program, Advisor, Special Scholarships and Graduate Studies, Department of Modern and Classical Languages Saint Peter’s College, Jersey City, N.J.

73. Navidad Arnett, Parent of a Person with Autism

74. Melissa Gordon
Parent of a Child with Asperger’s AND Concerned Citizen

75. Connie Lapin, Advocate, Community Activist and Parent of an amazing son (39) with the severe challenge of autism

76. Harvey A. Lapin, D.D.S., Dentist, advocate, parent

77. Laura Mercier

78. Vera Lingonis, Concerned Citizen (N.Z.)
Wellington, New Zealand

79. Susan Yuan, Ph.D., Associate Director Center on Disability and Community Inclusion, University of Vermont, Parent of a 33 year old man with Angelman Syndrome, Center on Disability and Community Inclusion
University of Vermont

80. Autism Spectrum Differences Institute of New England