Susan's Blog

Monday, December 31, 2007

We’re Baaaaaack


Tabblo: Vacation in San Juan

Friday, December 28, 2007

How I Get Ready To Leave

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:


Tabblo: Mom and Dad are going away

…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.

Wednesday, December 26, 2007

Christmas 2007

Monday, December 24, 2007

Have Yourself A Merry Lightless Christmas

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!

Sunday, December 23, 2007

She’s Makin’ A List(s)

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

Just Sledding You Know What’s In My Head

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!

[youtube=http://www.youtube.com/watch?v=w1uZ_W7atDE]

Saturday, December 22, 2007

Action

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.


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.

Furthermore, a reader pointed me to a letter that has been circulating since November (thanks, Christine!) Many, including parents, self-advocates, and professionals, have signed. I just asked that my name be added. This letter, begun by Derrick Jeffries (derrick_jeffries@bestmail.us) is intended to go before the APA, American Psychological Association, in order to pave the way for ending the use of aversives as an educational tool everywhere. If you email Derrick with the subject line “sign onto the APA letter,” your name will be added to the list.

PLEASE CONSIDER SIGNING ONTO THE LETTER BELOW!!

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 25th, 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

More – or Less-on Plans

I have started planning for my next Baby Bellies class. I invited all of the girls with disabilities that I knew from Ben’s school and beyond (by discussing it with their teachers or their moms), as well as determining whether the four girls from last time were coming back (they are, plus a sister or two).

In order to get ready, I just ordered six child-size hip scarves and six child-size veils from the Moondance website. I am just so excited, because this means that I am going to have just what I need to teach my classes in January and then in the spring, and so on. I will have my own child-size stuff to distribute to them, in all colors, and then I don’t have to use my stuff and watch it get torn, dirty, etc. Besides, my hip scarves were always loose on them, no matter how much we tied them. And my veils were too wide, so the girls would often trip; not a good thing for an aspiring bellydancer. Now I can hand out little costumes in their favorite colors.

I probably need to bring in those cheap, long mirrors, too, and prop them up here and there so the girls can study their form.

I also have to put together a new collection of music, so that I can have just the right songs at the right time in class. I need a series of slow songs for stretching, then several taksim-like (no rhythm) for standing in one place isolations. And then, some quicker songs for learning traveling steps. And finally, some sinuous melodies for veilwork, which is their favorite. I could save my favorite up-beat numbers for last, for the purpose of creating dance routines, which they also love to do.

I also learned the benefit of break and snack time. And down time. So sometimes I start by having them sit around and watch one Bellydance Superstar number on DVD on my laptop. And halfway through the class we sit down and I give them goldfish or something, and they get drinks of water (wearing their hipscarves around the school, jingling all the way, making everyone smile). This helps them focus for the remainder, the dance routine part of the class.

It is interesting to me to see that in every class, what people want is to learn a dance routine. They want to be able to do the whole thing, not just learn the parts, because it was a dance that got them there in the first place. I was the same way. But now I’m learning that being given components and then layering them is the most useful thing because you don’t need to memorize someone else’s choreography start-to-finish; you need phrases that you can put together in your own way.

It all takes so much time and practice, and that is something the beginner does not want to hear. So I think it is my job as the teacher to make that beginning part as enjoyable as possible, and give them some of what they most desire (routines and cossies) as a motivation for learning the building blocks.

What all this really means to me is a commitment to teaching children dance, which just makes me so happy.

Friday, December 21, 2007

Evil Tickle Cough

What is with that cough of mine? Why does it happen like that, where I suddenly get that gripping tickle in my throat and then I’ve got to cough like crazy. Ned, Nat and I were at a party tonight where it happened; how embarrassing! I had to run into the bathroom to just cough and cough in peace. My eyes were tearing and my nose was red; I felt like I was a choking clown. “Help!” I said to Ned, “I’m anaphylacting like crazy!” Is that what it is? Allergies? Finally Ned got my bag and I used the inhaler and took Claritin, which I now travel with! I have to, because of this fershluggener tickle cough.

Then, all was well. Cats may have been involved…my host has several which were unseen.

Maybe it’s because we were out of coffee this morning and I prayed, “Oh, I need some coffee!” and maybe what was heard was, “Oh, I need to cough — ee!”

Good night.

Fakrenha Out Loud

During the times that I am not busy screaming about terrible schools, delightful sons, too much snow, writing/editing my novel, I am dancing — just about every night.

Fakrenha is a Natacha Atlas song that has taken hold of my mind, and I don’t even know what it means (yet). I have a few calls in to different Arabic-speaking friends. The song starts slow, almost seems to lack a rhythm; but then, after a few phrases, the drums come in, and the Egyptian strings, and then — wow! A fantastic Arabic-European song.

I danced to it in this, my new black cossie .

and in this, my red Eman Zaki:

R-E-S-P-E-C-T

All I’m askin’
Is for a little respect in your group home, yeah
In your group home
–Aretha and me

How do I get an online petition started to close down the Judge Rotenberg Center which I can then bring to my Governor. I can’t believe that the $%^& Boston Globe has an editorial today saying that “there is a role for aversive therapy if it is practiced with great restraint and respect.” Respect? How does that work, exactly? “Oh, dear autistic student, with the ‘self-destructive and violent’ behavior: forgive me for what I am about to do to you in the name of teaching you how to be calm and peaceful.”

That is because — with all due restraint and respectThe Globe Editorial page has its head up its ass. Instead of condemning electric shock for being outmoded and barbaric, and calling for the JRC to be closed, The Globe thinks it knows enough to merely recommend — in mealy-mouthed, spineless, we-don’t-know-what-it’s-like- we’re-not-the-experts-or-parents-dealing-with-these-monsters, and let’s-be-moderate-and-not-throw-the-baby-out-with-the-bathwater fashion — that the JRC be investigated and monitored in an “ongoing and intensive” manner.

Sure, investigate. But close it down in the meantime. Do we really need another team of “experts” to tell us that this is wrong?

I know what it’s like. Okay? I know. Read the book. Read the blog. Ask me. Look at my hands, my scars.

You don’t torture to teach a lesson. You just don’t. Case closed.

Thursday, December 20, 2007

Getting My Words’ Worth

My heart leaps up
when I behold
My bright and sunny boy
So was it when his life began
So is it now that he’s a man
So be it — for I shall grow old
The love of mother for her son
Especially such a needy one!
Of all the things he wondered at
Old Wordsworth never imagined Nat.

Is this the United States?

I’m tired of the excuses everybody uses
He’s your kid, do as you see fit.
But get this through that I don’t approve of what you did —
–Natalie Merchant

The Judge Rotenberg Center must be closed. It should never have remained open after the Department of Mental Retardation stopped referring clients there because of its unorthodox treatments. But the Behavioral Research Institute, (now renamed the JRC) took the DMR to court and won.

So now the is JRC is under more critical scrutiny for a horrible sequence of events that left two teenagers with burns on their skin.

“It was a perfect storm of things that went wrong that night,” Ernest Corrigan, a spokesman for the Center told the Boston Gl0be.

I would say that you always take the weather with you. Two teenage boys were tortured by the staff at their JRC group home, because of a prank call that ordered this punishment. The Globe keeps talking about how “no IEPs were checked” before this heinous, barbaric torment began (77 shocks administered to one of the boys, 29 to the other). Implying that if it had been on the IEP, it would have beeon okay?

I’d say that JRC students’ IEPs are checked alright — checked at the door. Along with their civil rights. Is there a justification on earth, a behavior problem so thorny and mystifying, that torture would ever be the solution? Whatever happened to our Constitutional right to be protected against “cruel and unusual punishment?” Does that not extend to the severely autistic or attention deficient?

What I believe is that the people who refer to the JRC and the people who believe in the JRC methods are actually not acting in their clients’ best interests. Not at all. In fact, I would go as far to say that they have all given up on their kids. To say that nothing else “works.” What are the goals? To simply get rid of an undesirable behavior, or to help and teach someone? To understand what is causing the undesirable behavior, or to merely stamp it out?

Doctors, therapists, educators, and parents are supposed to investigate and thoroughly try to analyze difficult behaviors. Bring in more thinkers, really troubleshoot the problem.

How in the world can hurting another human being be the way to teach?

Monday, December 17, 2007

Something’s Roten in the State of Massachusetts

Please tell me how it is that Massachusetts, on of the most cutting-edge states in terms of educational progress, can still allow a place like the Judge Rotenberg Center to exist? What is the justification for a school that uses electroshock therapy as well as food deprivation and other forms of punishment, in this day and age? The Boston Globe thinks they know. But the Boston Globe has often gotten things wrong when they tried to take on Special Education. I am remembering, of course, former Globe reporter Kate Zernike’s horrible attack on Special Education several years back, which coincided with the State House gutting Chapter 766, the Massachusetts Special Education Law.

This time, the justification for severity, i.e., aversive therapy, is the children themselves. For they have autism, MR, ADD. Ah, so that is supposed to explain it for us all. We’ve seen the Autism Speaks film, after all. We’ve seen the Ransom Notes. We’ve watched St. Elsewhere, and seen the Wild Child depicted again and again. And, well, the parents and the schools who referred the children to the Judge Rotenberg Center just could not handle the kids. So they get placed in a school that uses electric shock to the skin and other forms of painful punishment, in order to “treat” their challenging behaviors.

Newsflash to the Globe and the JRC: if a child is gouging at his own eyes, biting himself, banging his head, as some of these JRC students were reported as doing, there is a reason for their behavior. This is a person, first and foremost, so you can be sure that people do not hurt and scream for no reason. But — a person who cannot communicate in the typical manners, a person with over-the-top sensory issues, a person who might have chronic stomach pain from an intestinal disorder that was undiagnosed because the person has autism — those people might have to scream to relieve their frustration and make their own pain stop. The specialists should be doing everything they can to find out why they are doing what they are doing, just as we do with cholicky babies. We don’t hurt them or even let them cry for long. We all know that physical punishment is wrong, inhumane, and does not even work. And yet, many autism specialists throw up their hands and say, “use behavioral methods,” or “Do what works.” Is the behavior something that calls for behavioral strategies, or is it something else? And is there ever a justification for aversive therapy? I cannot imagine there would be.

There is no justification. There is always a way to connect and help. Teachers have to stop and regroup. They have to keep going in and trying. They have to Do No Harm. That slogan doesn’t change just because one is autistic.

Old Gum


I thought of this while I was digging in a frenzy through my bag for a piece of gum…

(Sung to the tune of Eric Clapton’s Old Love)

I can feel your tiny body
When I’m rooting through my bag
There’s too much craving going on
And my metabolism’s a drag

And it’s making me so hungry
To know that your mint will always burn
I ain’t never gonna stop blowing bubbles
No, now, always yearn, always yearn

For Old gum —
even tho I’m grown
Old gum, old gum
Tastes like a stone

I can feel your sweetness
Though I know it’s not real
Just an illusion
Caused by Splenda and orange peel

And it makes me so hungry
I love that your mint, it always burns
When will I stop blowing bubbles
Will I always yearn?

For Old gum
Old gum —
[AWESOME guitar solo — watch towards the end of it where he gets so into it he is humming to himself, totally lost in the music. At the end of the piece, your gum is probably dead, so spit it out and get a delicious fresh, bouncy piece]

Oh, this guy still does it for me, probably because he looks like a brown-haired Ned… that smile! Oh, be still, my heart.
[youtube=http://www.youtube.com/watch?v=54FtPpeg_3o]

Sunday, December 16, 2007

Hooray

Yay! We went out to a Christmas party without hiring a sitter! We told Nat in advance and drew up a new calendar. We left him with a Disney Sing-Along, and then he was going to watch The Simpsons with Ben and Max. I told him exactly when we would be back (in time for giving him his pills, before bedtime) and where we would be.

He wasn’t anxious! So we had a little date time with Max in charge, and it was OKAY!!!

I feel years younger, being able to do this once more. We have not left Max in charge since last May, when Nat’s really anxious time began. I know, I know, one day at a time, but this day was certainly a pleasant surprise.

Chanukah Guilt

As I predicted, to combat the indoor fever of the snowstorm, (I hate the way Nat lies around on the couch, so my guilt motivates me to think of things he likes to do) there was baking today. I invented a new cookie: Gelt Cookies, made from dark chocolate gelt crumbled into Chipless Chocolate Chip Cookie Dough from Mom’s Big Book of Baking (thanks, Sha!). Our friend Matt gave us a bag of classy Belgian gelt, and I thought it would taste great in the cookies, instead of the more pedestrian tollhouse morsels. I was right! (There is a variant spelling for these cookies, “Guilt Cookies,” in case you are on a diet and you eat them. Even the broken ones have carbs/calories.) Smelling them = one carb.

Snow Wonder

I’m typing through a haze of Afrin, Nyquil, not enough sleep, tickle-cough, and congested sinuses, so forgive any strangeness to this post. I am looking out my window at total white-out. Snow is pouring from the sky, blowing drifts against trees, houses, and cars. It is the Nor’ Easter they were all predicting, after all. By the time we went to bed predictions had been sliced down to 1-3 inches, or rain, as so often happens with these panic-casts. But while I was sleeping I thought I heard the roar of winter weather, and when I woke up I saw that it was alive and well.

It is no secret that I hate the winter and the cold. And yet, today, looking out at the vigorous storm, I do feel a sense of wonder similar to my springtime feeling, when I just can’t get over the activity of things that are not alive: the ground, the wind, the leaves. So much is going on out there, it feels a little exciting, like I’m anticipating a fun event.

Maybe there will be a fun event today. When it snows like this, all bets are off. All plans are suspended, while people bundle up and attempt to push back on their new workload of shoveling, by getting out there while it’s still coming down. That is Ned’s Sisyphean technique: to do several clearings of car, driveway, and walk, only to have it covered again. Mine is to wait until it is over and sunny, and then see what you’ve got and chip away at it. Sometimes my gamble pays off, and it turns to rain as is washed away. Sometimes I lose, and it becomes wet snow that is very heavy to shovel, and if I can’t finish it by the time the temperature drops, it freezes, and then you are stuck with whatever configuration you have carved — for weeks.

Ned gets the boys to shovel, especially Nat and Max. It’s amazing what they can get done, with that man-power! Nat loves to clear the cars. Max loves none of it, but does a good job. We baby Benji I guess, by not forcing him to go out every time. Today I think we’ll all go.

I wish that the fun activities that come to mind were not all food-based. I want to make the boys hot chocolate and pancakes, but the aroma kills me, trying to make do with my egg whites and low-fat cheese omelette. Or start gingerbread …. mmmmmmm I think that’s what we might do. I’ll just walk away when they start pinching off bits of it and eating it, and I’ll go get a piece of gum or slug down some heavily Splenda-d decaf. And think about how happy I’ll be on that beach in San Juan in just a few weeks.

Friday, December 14, 2007

Old Mom

I was once like you are now
and I know it isn’t easy
–Cat Stevens

I remember my very first parent support group, hosted by Greater Boston Association for Retarded Citizens and the Autism Support Center in Danvers. I braved snowstorms worse than last night’s to get to my meetings. Back then, Pre-Internet, the live, face-to-face parent support group was my lifeline. List-serve? Who knew? YahooGroup? Sounds like a bunch of whiskey-drinkin’ good ole’ boys. No, no, back then we had to trudge through three feet of snow uphill both ways to get our autism support.

One of the best things about that group was this dad, who had a teenage autistic son. When he spoke, I felt the ground shake with his hallowed vision. For this dad knew what The Future was like, and I needed to know that. I wanted to meet his kid, befriend him, and live in their house so that I would know what was maybe going to happen for Nat, what it would feel like, look like. I was starved for information that would lead me to Do Right By Nat, that big goal in the sky.

Some of my readers feel that way about me, because Nat is 18. I completely understand this feeling. Instead of worrying about will-he-ever-be-toilet-trained, or why-can’t-my-school-system-buy-a-clue, Ned and I are worrying about stuff like how’s-Nat-going-to-be-able-to-work, really work-if-he-occasionally-erupts-over-the-wrong-lights-being-on, or where-and-with-whom-is Nat-going-to-live? Or, how much money are we going to need for him, and how does that work? What is Social Security in terms of disability? How does he get it? Instead of wondering how much Nat will be able to talk, we now know: it is quirky and sometimes difficult to understand, sometimes not at all accurate. Which is in some ways what it was when he was four! But somehow, I understand now just how much he knows, and I am not worried in that respect.

Advice Tidbit#1: Development Happens. We also found that NOT ALL DEVELOPMENT OCCURS WITHIN THE FIRST THREE TO FIVE YEARS OF LIFE, Goddammit!!!!!! Sure, Early Intervention is a necessity, but if it doesn’t happen for your child by the time he is five, that doesn’t mean much! Nat developed a lot of his current language ability at 8. We really developed a great connection with him when he was 12.

Advice Tidbit #1a: Quit worrying about “normal.” To some mysterious degree, our kids are who they are. What they need is for us to educate them fully; to support their challenges; and then to accept them for exactly who they are. To love them with high expectations, but not with the aim of “making them normal.” (Whatever that is.)

Advice tidbit #2:
Find out if there is money to prevent institutionalization in your state NOW and get on the waiting list. In our state, we have a special grant, the DOE-DMR grant, which provides a family with around $20,000 a year to pay for staff who can help prevent residential placement. We only applied for this grant two years ago, and we are still 40th on the waiting list. If your child is anything like Natty, you can almost always make the case that you are one step away from residential. But take notes, create paper evidence of your struggles at home. You never know when you will need it. School notebooks that go home are good sources of evidence of your child’s struggles.

Advice tidbit #3: Look beyond your school system for help. You should all be very familiar with your state agencies by now. You should know who your liaison is, and be in touch regularly, at least annually. You should be finding out if there is respite money or home support available for whatever diagnosis you can manage to apply to your child. If you don’t understand what they are telling you, ask again. You are not stupid; the system is.

Advice tidbit #4: Find the good organizations, the non-profits, that exist to help. I mean Special Olympics, Best Buddies, church and synagogue groups, community service programs at your local high school.

Advice tidbit #5: Parks and Recreation Departments have pretty good resources in terms of fun for kids. By law, they should be making reasonable accommodations for yours. If your Parks and Rec do not offer programs that are accommodating, complain. I believe it is IDEA, ADA, Title 1 or Title 9 that I am referring to. Perhaps your Special Education Director at your school department can create a liaison program offering activities for your kid. In our town, several parents got together and hired an outside agency to run a recreation program for kids like Nat, in partnership with the Parks and Rec.

Advice tidbit #6: Adolescence Happens. Grab them and hug them and smell them as much as you can while they’re little. While doing so, blank your mind and just feel the love, inhale it, bask in it. If all we get is tiny tender moments every day, rather than one big grand old time, then — take it from me — do not squander them. Being able to carry and embrace a child is a gift and IT DOESN’T LAST.

Take your time, think a lot.
Think of everything you’ve got. I will if you will!

Thursday, December 13, 2007

The Imperfect Storm

While I was driving one foot per minute through the deep, white snowstorm to get Max from the high school, I started thinking, “Also got to make dinner, got to make dinner, got to…” and getting depressed. I was also worrying that it was literally taking me an hour to get to Max, and therefore, Nat would be in his little bus for many hours (his school is 25 mins. away usually). Would he be lulled by the slow, long drive, which is what happens most of the time, or would he get upset every time the driver put on her brakes? Would he hurt her and cause an accident? I should have gotten him early when I could have, but I needed the break.

I caught myself slipping down, and I had already been low all day. I had to put on the brakes myself. This is going to be my life — well, what am I going to do, leave? No. I love them. So this is my life. So I’m going to spend so much time in snow, in the car, and dealing with my sons’ troubles.

So I knew that I just had to find a way to be happier, moment-by-moment. I wondered what would help. Little things that are just within reach: Seeing everyone settled at home, for starters. A clean house. An idea for dinner.

Max was standing outside the Unified Arts building, a lone figure in all black. He slid in next to me, and barely said anything. “You’re mad at me because I made you come home today, right?” (Instead of hanging out with his friends.)
“Mmmm.”
I stroked his chin. He ducked into his coat. Mad at me. But I had him, safe.

Back home, Ben was oblivious to the storm, playing with the Wii. He got me to try the tennis and the baseball. I felt unhappy again, standing there, swinging idiotically towards the TV while the figure that looked like me onscreen missed ball after ball. “Do you like it, Mom?”
“Yeah,” I said, grimacing. “But I gotta stop soon,” because I’m feeling worried about Nat. Nat away, Nat here. Ned took over and I think Ben was happy with that.

I went to get the third or fourth load out of the dryer. I started making my bed with the warm, clean sheets.
“Nat’s here!” shouted Ned.

Okay, I thought. We’re all here, and safe.

I decided to make macaroni and cheese.

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