Son-Rise New Frontiers Program

Posted on November 27, 2006 by sandrasinclair

I highly recommend the Son-Rise program for autism. Son-Rise, like RDI, is very empowering for parents, because as a parent you realize how very important you are and how much influence you really have on your child's progress.

Most children with autism respond well to Son-Rise, because the program establishes trust quickly with the child and as a result, they are usually more willing to interact with you more and accept more because of that level of trust and interaction. I also love how there are no limits or expectations put on how far your child can go with this program. There is a healing that happens in your heart and mind for your child and for your family regarding what autism means to you through Son-Rise, and I'm very grateful for their approach.

Shortly before Thanksgiving, John and I were fortunate enough to attend the Son-Rise New Frontiers Program in Sheffield Massachussetts.

Son-Rise, like RDI, focuses on the interpersonal, communication and flexibility goals first, then uses those skills to build other friendship and conversational skills, and focuses lastly on academics, reasoning, self-help, and motor skills.

New Frontiers is an advanced training program that builds on the foundation of the Son-Rise Start-Up. In New Frontiers, we learned specifics on how to establish program goals, and the techniques on how to achieve them, as well as looking at our own beliefs about what's possible.

We learned how to use both our child's activities and our activities to achieve our goals – to build length of interactional attention, to increase flexibility, to build language and communication skills, and ultimately to build friendship and conversational skills.

This is not done in a static way, but rather in a more flexible way, through interactive play and later on adding role plays, always adding to what we're doing and what we've done before. We learned how to keep growing and expanding our goals and activities to make them gradually more and more complex and changeable over time so that a child can learn how to deal with the world effectively within our program first.

We also learned how to be students of ourselves- regarding our feelings, attitudes and beliefs about our child, ourselves, our program, and how our child exists in our world. This is the only program out there that deals with the head and heart of the parent, and the people working with your child. You learn how to learn from yourself and from your child, how to examine and question your beliefs about what's possible and what's important, and how to ultimately be in a good place with all of this, while always trying for more.

The foundational idea of Son-Rise is total acceptance of the child as he is, while always extending kind invitations for more growth. Son-Rise goes with the child instead of against the child, so the child feels some control and trust in working and playing with you, and that helps the child to feel safe about gradually allowing new things in. Consequently, there are very few “no's” at the beginning. Once the child has mastered basic flexibility, social, and communication skills, that's when more “no's” start to come in.

In my experience, when a child is learning the basic stuff about how to be flexible, how to trust another, how to communicate and how to interpret and respond to the world around them, that you can use Relationship Development Intervention (RDI) or Son-Rise. However, just speaking from my own experience, Son-Rise is probably the easiest and quickest way to get through those really tough early stages with the least amount of resistance from your child.

I'm so glad that we looked into Son-Rise. It's a highly practical and healing way to remediate a child's autism.

Sandra Sinclair, www.autismvoice.com

Parenting Autism- Getting Past the Embarrassment

Posted on November 11, 2006 by sandrasinclair

One of the more difficult parts of parenting a child with autism,
and something that can be hard to talk about, is the embarrassment you may feel about your child's behavior. As parents, we're not supposed to feel embarrassed about our children, yet we're also taught that children should behave, and if they don't, it's probably a result of faulty parenting.

This belief system can be very disempowering, especially for a
parent of a child with autism, because it's impossible to control
everything your child does. At those times when your child is
acting strangely or falling apart, you can feel embarrassed or
angry about the judgment you may feel from others. As a result, you may feel pressure to do something against your instincts, such as punish your child, just to save face, to look like you're in
control, or to assuage your anger.

In reality, just like the sadness issue, how you feel about others'
opinions is completely up to you. Believe it or not, you can choose
to feel however you like when your child throws a tantrum in the
mall. You don't have to feel unhappy just because your child is
unhappy, or because others may judge you or your child. It's
possible to empathize with your child in the situation while
remaining happy and calm, or at least neutral and calm.

Next time you're in such a situation, ask yourself this question-

“Which attitude would best serve me, my child, and this situation?
Happy and calm, or embarrassed and angry?” My guess is that happy and calm would be the better choice in most situations, but
ultimately your mindset is up to you. You cannot be influenced by
others' opinions, your child's feelings, or anything else, unless
you decide that you can.

Now let's turn for a moment to the person who is judging your
child. This is someone who is judging a child with special needs.
What exactly does that say about them? In reality, their judgment doesn't define you or your child at all. Instead, their judgment
defines them as someone who needs to judge. It has nothing to do with you or your child.

If your child could do better right now, he would. In time he will
do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.

Sandra Sinclair

www.autismvoice.com

Parenting Autism- Getting Past the Sadness

Posted on November 3, 2006 by sandrasinclair

I remember feeling quite sad for a long time about my son's autism, and at times that feeling still overtakes me, but now things are different, because I understand that what the rest of the world has decided is a tragedy is not necessarily one. I have chosen not to follow what everyone else thinks I should feel. Instead, I choose to feel happy most of the time, because I don't think my child is a tragedy at all, and I wrote two articles about this – one caled Getting Past the Sadness, and one called Getting Past the Embarrasment. Both are about our acceptance or not of other people's views and attitudes.

- Sandra Sinclair

Parenting Autism- Getting Past the Sadness

It's very common for a parent of an autistic child to sometimes feel quite sad about his or her child's autism. After all, every parent wants his or her child to be accepted, to live a happy life, and to make all of their dreams a reality. In fact, you may have experienced an overwhelming feeling of sadness upon hearing of your child's autism, as our society has long held the idea that your child's condition is tragic and incurable.

But I invite you to look at things in a different way. Perhaps you can look at your child as not tragic or incurable, but rather, as unique and remarkable.

In our society, people who are different are often seen as unfortunate, sad cases. But if you think about it, your child is probably a pretty amazing person. His autism is actually a part of who he is, and he's probably not sad about it at all, unless society has convinced him otherwise.

Imagine if our society held autism up as an incredibly marvelous thing. In that case, most of us would be pretty happy about our child's autism, right? Our child would still be autistic, but our perception of what that means would be different, and so would our resulting emotional response.

In either case, society is telling us how we should feel- happy or unhappy. But in reality, no one else can dictate your feelings, unless you allow it. You truly decide how you feel from moment to moment. You decide if you're going to buy someone else's idea about how you should feel. And yes, you can decide to be happy or unhappy, despite what everyone has told you. You can decide to be happy now, without waiting till your child is recovered. I'm not talking about denial, where you're pushing down feelings and pretending they're not there. I'm actually talking about making the decision to be truly happy.

That doesn't mean that you give up on hoping and trying for more. If you can hope and work for your child's best outcome without making your happiness dependent upon it, and if you fully accept your child as he is now, even with his autism, then your child will feel that acceptance and positive expectation, and will respond by believing in himself.

No matter how many gloom and doom predictions others make about your child, you ultimately decide what you believe. Making the decision to fully accept your child and to be happy now, while trying for the best possible outcome will give your child what he needs- lots of learning opportunities in an accepting and loving environment.

Sandra Sinclair
www.autismvoice.com

A letter to explain your child's autism to other children

Posted on October 12, 2006 by sandrasinclair

Here's a terrific letter that you can print out or read to your
child's classmates, friends, or any other children that your child knows to explain autism to them.

It's written on a primary school level, so for preschoolers
and kindergarteners you may need to do a little paraphrasing, but it's great for explaining what autism is. It's good for adults as well.

If you don't want to use the word autism as yet when talking with other children, you may want to say “children like (your child's name)”, instead of using the label. Sometimes young children only need a basic explanation.

One thing you may want to add to this letter:

You can say that even though your child may not look at them or talk to them, he does want to play. Even though he doesn't show it, to just talk to him gently and play with him anyway.

To see the letter, go to:

http://autism-ascc.org/kids.htm

Sandra Sinclair www.autismvoice.com

Parenting Autism – Being Your Child's Best Resource

Posted on September 8, 2006 by sandrasinclair

Don’t be Afraid of the Myths and Misconceptions about Autism.

Parents often feel sad, afraid and confused when they learn their child has an autism spectrum disorder, and It’s no wonder — autism is often portrayed as a grim, lifelong disability, from which there is no hope of recovery.

Of course, these expectations are based on outdated information about people who grew up a generation ago, when only the most severe cases were diagnosed, and treatment was practically nonexistent. Unfortunately, parents are still given this outdated information, presented as if it’s still accurate and relevant in our present day.

These misconceptions lead to more fear, more sadness, limited expectations, and feelings of incompetence in parents about how to best help their child. As a result, some parents rely entirely on other people to work with their child and to make decisions for their child, instead of trusting their own instincts, knowledge, and abilities. Parents are their child’s best resource, yet somehow that’s not the message they’re getting from the experts.

Don’t be Afraid to Believe in Your Child’s Potential.

Each child has their own unique, unknown potential. Everyone who works with your child must believe in his ability to learn, grow, and have a bright future.

With effective intervention, the vast majority of children experience improvement, ranging all the way from slight recovery to complete recovery, and everything in-between. The degree of recovery a child experiences depends primarily on his unique potential, combined with whatever learning opportunities he experiences.

Learning opportunities are not just teaching style and content alone. A child's overall environment and expectations are also an integral part of his learning experience.

Knowing these things, we can do three very powerful things for our child:

1. We can love our child as he is now, and provide a positive, nurturing environment.

2. We can keep a completely open mind as to how far our child can go.

3.We can present lots of positive opportunities for learning and growth.

If we do these things, our child will have the opportunity to truly fulfill his unique potential.

Don’t Be Afraid to Ask Questions.

If your child has been diagnosed with an autism spectrum disorder, it’s important to ask questions. Ask as many as you need in order to feel confident in your understanding of the disorder. Even if you get most of your initial questions answered, you may find there are still many questions that no one can answer conclusively, because in many ways autism research is still in its infancy. Researchers are still gathering information regarding cause, prognosis, and what interventions are most effective.

Don’t Be Afraid to Explore Your Options.

Get to know all your options. It takes some time, but continue to seek opinions and advice from people with different backgrounds in autism. Even after your initial questions have been answered, it’s still a good idea to consult with additional people with different types of knowledge and expertise.

For instance, you may want to ask a few different doctors, psychologists, teachers, therapists, and parents with contrasting approaches to autism about their opinions and experience. Our understanding of autism is continually evolving, and one person may have knowledge that another does not.

As you gather more and more relevant information, you will make better and better decisions for your child. Remember, no decision is carved in stone. In fact, you’ll probably change direction and switch approaches a few times, and that’s okay. It’s all part of the process of learning what works best for your child, and adapting to your child’s changing needs.

Don’t Be Afraid to Work with Your Child.

Never believe that the experts have all the answers and that you should not get involved with your child’s treatment program. Talk with the experts to learn more about what you can do at home with your child. Do further research by reading books and articles on autism, attending classes and conferences, and talking to other parents.

You know your child better than anyone else. In addition, you have an undeniable bond with your child that no one else could ever possibly have. Take advantage of your bond to teach your child, build his self-esteem, and explore treatment options you feel will work for your child.

Regardless of their potential, children will seldom go beyond the expectations of their parents. We can't know how far our children can go, but we can take the lid off the box of low expectations, by having faith in their ability to learn, and by providing the loving environment necessary for them to achieve their highest potential.

Sandra Sinclair, www.autismvoice.com

Use of Aversive Interventions in New York State, US

Posted on August 22, 2006 by sandrasinclair

This legislation is a wake-up call for all of us, because laws can change quickly and dramatically which affect our children, no matter where we live.

New York recently passed a law to allow for use of aversive interventions on children if deemed absolutely necessary.

While the goal was to put parameters on how schools discipline and control special needs children, unfortunately the result was that aversives are now allowed ( electric shock, holding or tying children down, witholding of food, drink, sleep, clothing using noxious sprays to the face, painful tastes to the lips, locking them in rooms, etc. ) in certain circumstances.

In my opinion, this decision legalizes abuse in schools and residential facilities. Some basic human rights have been taken away from special needs children in New York, and unfortunately it reveals the darker side of how we regard children with special needs in general, in terms of their humanity and worth.

If a teacher in a typical school setting punished a student in any of these ways, it would be considered reprehensible. Not only would they be fired, but they would subsequently be criminally prosecuted for engaging in these same acts. How is it possible then, that these same punishments, considered reprehensible and intolerable, are condoned and protected under law for children with special needs?

I'm not an attorney, but I seem to remember something in <?xml:namespace prefix = u1 />US IDEA law that states that someone with a disability cannot be punished or disciplined for a behavior that is caused by their disability. With PDD or autism, behaviors such as flapping hands, repeating sentences, tantruming, biting oneself, and a multitude of other behaviors caused by PDD or autism should not be punished, under the IDEA law.

For example, no one would ever punish someone with a neurological disability such as Parkinsons, for shaking or trembling. You'd never hear “stop shaking!” or “quiet body!” Yet our children are constantly punished for behaviors that are caused by their neurological problem- their autism. The fact is that if they didn't have autism, they wouldn't be doing these things. A punitive ”hands down!” voice command when a child is flapping their hands, or a time-out for scripting lines from a video are some examples of punishing a child for a behavior that is caued by their autism. In my opinion, many schools are breaking IDEA law by punishing students for behaviors that are caused by their autism or other disabilities.

And now New York has the go-ahead to administer aversives to children with disabilities in certain circumstances, as determined by school personnel. In other words, whenever the teacher or administrator deems ”special circumstances” at the time. I can guarantee that children will be abused, and it will be sanctioned by the state. This is a decision that needs radical reversal, immediately.

Sandra Sinclair,www.autismvoice.com

THE STATE EDUCATION DEPARTMENT / THE UNIVERSITY OF THE STATE OF NEW YORK / ALBANY, NY 12234

TO:

EMSC-VESID Committee

FROM:

Rebecca H. Cort

SUBJECT:

Emergency adoption of proposed regulations relating to behavioral interventions, including the use of aversive behavioral interventions.

DATE:

June 6, 2006

STRATEGIC GOAL:

Goals 1 and 2

AUTHORIZATION(S):

SUMMARY

Issue for Decision

            Should the Regents approve as an emergency action the proposed amendment to section 19.5 of the Rules of the Board of Regents and the proposed amendments to sections 200.1, 200.4 and 200.7 and a new proposed section 200.22 of the Regulations of the Commissioner of Education, relating to behavioral interventions?

Reason for Consideration

            Review of Policy.

Proposed Handling

            The proposed amendment is before the Committee for emergency action.

Procedural History

     This issue was first discussed at the March 2006 EMSC/VESID Committee Meeting. Draft proposed regulations were discussed at the May 2006 EMSC/VESID Committee Meeting.

Background Information

Currently, neither New YorkState (NYS) Education Law nor Regulations of the Commissioner prohibit the use of aversive behavioral interventions in school programs, although the Rules of the Board of Regents prohibit corporal punishment. There is currently a lack of a clear policy and no standards or guidance on this issue at a time when we are assessing the extent of the use of aversive interventions at public and private school programs. We believe that greater guidance and oversight is necessary to ensure the availability of professional advice to school districts and parents when making the difficult decision as to whether all possible alternatives to aversive interventions have been considered and, where aversive interventions are determined to be absolutely necessary, on how to minimize their intensity and duration.

At the March 2006 EMSC/VESID Committee meeting, the Regents reviewed issues to consider in discussing and developing a policy on the use of aversive behavioral interventions. At the May 2006 Committee meeting, the Regents discussed proposed draft regulations and reviewed additional findings relating to the need for a policy on the use of aversive behavioral interventions, including information that:

·       At least two approved private preschool programs use some forms of aversive interventions, such as the application of lemon juice or hot sauce to a student’s lips for inappropriate behaviors. There are no State standards that would limit or provide required oversight of the administration of such interventions (e.g., there is no current requirement for Human Rights or Peer Review Committee reviews for such recommendations). We have learned that in some instances the school districts that placed the preschool children in these programs were unaware that such aversive behavioral interventions were being used with the children.

·       The policy of the residential school that uses aversive interventions most extensively includes manual and mechanical movement limitation; contingent food programs and electrical stimulation (i.e., electric shock). The Department conducted a site review of this program and identified several findings that raise significant concerns about the use of aversive behavioral interventions as they are being used with NYS students. In addition, we were unable to identify any peer-reviewed research which supports the interventions as used at this school, including the use of electric shock on the population of students at the intensities, frequency, circumstances, and for the types of behaviors and duration (in some cases for more than three years) for which they are used. A report of findings from two recent visits to this school has been shared with the members of the Board of Regents under separate cover.

            The purpose of the proposed amendment is to establish policy and general rules for behavioral interventions, including a prohibition on the use of aversive behavioral interventions. The proposed regulations would establish a process whereby a panel of independent experts would provide a recommendation to a committee on special education (CSE) or committee on preschool special education (CPSE) for a child-specific exception to the prohibition on the use of aversive behavioral interventions when necessary for behaviors that pose significant health and safety concerns. The proposed amendment would also establish standards for assessing student behaviors, developing and implementing behavioral intervention plans, emergency interventions, use of time out rooms and standards for programs using aversive behavioral interventions, as authorized through the child-specific exception process.

The proposed amendment was modified from the draft version discussed at the May 2006 Regents meeting as follows:

·       The definition of aversive behavioral interventions was modified to include noxious tastes; to clarify that contingent food programs means withholding meals or limiting essential nutrition or hydration; and to clarify that the term does not include interventions medically necessary for the treatment or protection of the student.

·       The program standards for functional behavioral assessments (FBA) and behavioral intervention plans were modified to require multiple sources of data to establish a baseline of behaviors with regard to the frequency, duration, intensity and/or latency of the behaviors.

·       The process for child-specific exceptions to use aversive behavioral interventions to reduce or modify student behaviors was modified to limit the independent panel to three members; to delete the requirement that the panel reach unanimous agreement; to add that the panel review the student’s diagnosis(es); and to modify the criteria upon which the panel makes its determination as to whether a child-specific exception to the prohibition on the use of aversive behavioral interventions is warranted. The time period of 15 business days for the panel determination was modified to apply when a CSE or CPSE is first considering a child-specific exception to the prohibition on the use of aversive behavioral interventions.

·       The program standards for the use of aversive behavioral interventions was modified to prohibit the use of restraint combined with other aversive behavioral interventions on a student; and to prohibit the use of automated aversive conditioning devices.

·       The requirements for the ongoing monitoring of student progress when aversive behavioral interventions are used were modified to include reports on the assessment of and strategies used to address any indirect or collateral effects the use of aversive behavioral interventions may be having on the student.

Timetable for Implementation

            The effective date of the emergency adoption is June 23, 2006. A Notice of Emergency Adoption and Proposed Rule Making will be published in the State Register on July 12, 2006. Public comment will be accepted until August 28, 2006. The proposed amendment will be presented to the Board of Regents at the September 2006 meeting for permanent adoption.

Recommendation

            It is recommended that the Board of Regents take the following action:

VOTED:
            That section 19.5 of the Rules of the Board of Regents be amended; that new paragraphs (lll) and (mmm) of section 200.1 of the Regulations of the Commissioner be added; that subparagraph (i) of paragraph (3) of subdivision (d) of section 200.4 of the Regulations of the Commissioner be amended; that subparagraph (i) of paragraph (2) and subparagraph (iv) of paragraph (3) of subdivision (a) of section 200.7 of the Regulations of the Commissioner be amended; that a new paragraph (8) of subdivision (b) and a new paragraph (6) of subdivision (c) be added to section 200.7 of the Regulations of the Commissioner; and that a new section 200.22 be added to the Regulations of the Commissioner, as submitted, effective June 23, 2006, as an emergency action upon a finding by the Board of Regents that such action is necessary for the preservation of the public health and safety in order to minimize the risk of physical injury and/or emotional harm to students who are subject to aversive behavioral interventions that inflict pain or discomfort, by immediately establishing standards for such interventions that will ensure they are used only when absolutely necessary and under conditions of minimal intensity and duration to accomplish their purpose.

Attachments

PROPOSED AMENDMENT OF SECTION 19.5 OF THE RULES OF THE BOARD OF REGENTS AND SECTIONS 200.1, 200.4 AND 200.7 OF THE REGULATIONS OF THE COMMISSIONER OF EDUCATION AND PROMULGATION OF A NEW SECTION 200.22 OF THE REGULATIONS OF THE COMMISSIONER OF EDUCATION PURSUANT TO SECTIONS 207, 210, 305, 4401, 4402, 4403 AND 4410 OF THE EDUCATION LAW, RELATING TO BEHAVIORAL INTERVENTIONS, INCLUDING THE USE OF AVERSIVE BEHAVIORAL INTERVENTIONS
STATEMENT OF FACTS AND CIRCUMSTANCES WHICH NECESSITATE

EMERGENCY ACTION

            The purpose of the proposed rule is to establish standards for behavioral interventions, including a prohibition on the use of aversive behavioral interventions; to provide for a child-specific exception to the prohibition on the use of aversive behavioral interventions; and to establish standards for programs using aversive behavioral interventions.
Currently, neither New York State Education Law nor the Regulations of the Commissioner prohibit the use of aversive behavioral interventions in school programs serving New York State students. Aversive behavioral interventions have the potential to affect the health and safety of children, yet there is currently a lack of a clear policy and no standards on their use in school programs. Through site visits, reports and complaints filed by parents, school districts and others, the Department identified concerns with preschool programs serving children with disabilities that use aversive behavioral interventions such as sprays to the face and noxious tastes placed on the child's lips, and an out-of-state residential school serving more than 145 New York State students with disabilities that is using contingent food programs, mechanical restraints and electric shock interventions to modify students' behaviors. A recent site review of the out-of-state residential school identified significant concerns for the potential impact on the health and safety of New York's students placed at this school. Regulations are needed to limit the aversive behavioral interventions that inflict pain and discomfort to children and have the potential to result in physical injury and/or emotional harm. In those exceptional instances when a child displays such extreme self-injurious or aggressive behaviors as to warrant a form of punishment to intervene with the behavior, regulations are necessary to ensure that such interventions are used in accordance with the highest standards of oversight and monitoring and in accordance with research-based practices.
Emergency action to adopt the proposed rule is necessary for the preservation of the public health and safety in order to minimize the risk of physical injury and/or emotional harm to students who are subject to aversive behavioral interventions that inflict pain or discomfort, by immediately establishing standards for the use of such interventions that will ensure they are used only when absolutely necessary and under conditions of minimal intensity and duration to accomplish their purpose.
It is anticipated that the proposed rule will be presented to the Board of Regents for adoption as a permanent rule at the September 2006 meeting of the Board of Regents, which is the first scheduled meeting after expiration of the 45-day public comment period mandated by the State Administrative Procedure Act.

AMENDMENT TO THE REGULATIONS OF THE COMMISSIONER OF EDUCATION
            Pursuant to Education Law sections 207, 210, 305, 4401, 4402, 4403, and 4410
            1.         Section 19.5 of the Rules of the Board of Regents is amended, effective June 23, 2006, as follows:
§ 19.5 Prohibition of corporal punishment and certain behavioral interventions.
(a) Prohibition of corporal punishment.
(1) No teacher, administrator, officer, employee or agent of a school district in this State, [or of] a board of cooperative educational services (BOCES), a charter school, State-operated or State-supported school, an approved preschool program, an approved private school, an approved out-of-State day or residential school, or a registered nonpublic nursery, kindergarten, elementary or secondary school in this State, shall use corporal punishment against a pupil.
[(b)] (2) As used in this section, corporal punishment means any act of physical force upon a pupil for the purpose of punishing that pupil, except as otherwise provided in [subdivision (c)] paragraph 3 of this [section] subdivision.
[(c)] (3) In situations in which alternative procedures and methods not involving the use of physical force cannot reasonably be employed, nothing contained in this section shall be construed to prohibit the use of reasonable physical force for the following purposes:
[(1)] (i) to protect oneself from physical injury;
[(2)] (ii) to protect another pupil or teacher or any person from physical injury;
[(3)] (iii) to protect the property of the school, school district or others; or
[(4)] (iv) to restrain or remove a pupil whose behavior is interfering with the orderly exercise and performance of school or school district functions, powers and duties, if that pupil has refused to comply with a request to refrain from further disruptive acts.
(b)       Prohibition of the use of aversive behavioral interventions.
(1)       No public school, BOCES, charter school, approved preschool program, approved private school, State-operated or State-supported school in this State, approved out-of-State day or residential school, or registered nonpublic nursery, kindergarten, elementary or secondary school in this State shall employ the use of aversive behavioral interventions to reduce or eliminate maladaptive behaviors, except as provided pursuant to section 200.22(e) and (f) of this Title.
(2)       As used in this section, aversive behavioral intervention means:
(i)         application of noxious, painful, intrusive stimuli or activities intended to induce pain such as electric skin shock, ice applications, hitting, slapping, pinching, kicking, hurling, strangling, shoving, deep muscle squeezes or other similar stimuli;
(ii)        any form of noxious, painful or intrusive spray, inhalant or tastes;
(iii)       withholding sleep, shelter, bedding, bathroom facilities or clothing;
(iv)       contingent food programs that include withholding meals or limiting essential nutrition or hydration or intentionally altering staple food or drink in order to make it distasteful;
(v)        movement limitation used as a punishment, including but not limited to helmets and mechanical restraint devices;
(vi)       the placement of a child unsupervised or unobserved in a room from which the student cannot exit without assistance; or
(vii)      other stimuli or actions similar to the interventions described in subparagraphs (i) through (vi) of this paragraph.
The term does not include such interventions as voice control, limited to loud, firm commands; time-limited ignoring of a specific behavior; token fines as part of a token economy system; brief physical prompts to interrupt or prevent a specific behavior; interventions medically necessary for the treatment or protection of the student; or other similar interventions.
2.         Paragraphs (lll) and (mmm) are added to section 200.1 of the Regulations of the Commissioner of Education, effective June 23, 2006, as follows:
(lll)       Aversive behavioral intervention means application of noxious, painful, intrusive stimuli or activities intended to induce pain such as electric skin shock, ice applications, hitting, slapping, pinching, kicking, hurling, strangling, shoving, deep muscle squeezes or other similar stimuli; any form of noxious, painful or intrusive spray, inhalant or tastes; withholding sleep, shelter, bedding, bathroom facilities or clothing; contingent food programs that include withholding meals or limiting essential nutrition or hydration or intentionally altering staple food or drink in order to make it distasteful; movement limitation used as a punishment, including but not limited to helmets and mechanical restraint devices; the placement of a child unsupervised or unobserved in a room from which the student cannot exit without assistance; or other similar stimuli or actions. The term does not include such interventions as voice control, limited to loud, firm commands; time-limited ignoring of a specific behavior; token fines as part of a token economy system; brief physical prompts to interrupt or prevent a specific behavior; interventions medically necessary for the treatment or protection of the student; or other similar interventions.
(mmm) Behavioral intervention plan means a plan that is based on the results of a functional behavioral assessment and, at a minimum, includes a description of the problem behavior, global and specific hypotheses as to why the problem behavior occurs and intervention strategies to address the behavior.
3.         Subparagraph (i) of paragraph (3) of subdivision (d) of section 200.4 of the Regulations of the Commissioner of Education is amended, effective June 23, 2006, as follows:
(i)         in the case of a student whose behavior impedes his or her learning or that of others, consider strategies, including positive behavioral interventions, and supports and other strategies to address that behavior that are consistent with the requirements in section 200.22 of this Part;
4.         Subparagraph (i) of paragraph (2) of subdivision (a) of section 200.7 of the Regulations of the Commissioner is amended, effective June 23, 2006, as follows:
(i)         Conditional approval for private schools shall be limited to a period of one school year, or the period of time required to complete approval, and will be based on:
(a)       .   .   .
(b)       .   .   .
(c)        .   .   .
(d)      for schools operating as corporate entities, evidence of the following:
(1)       .   .   .
(2) .   .   .
(3)      for out-of-state schools, a license or charter from the state education agency of the state in which the school is located; [and]
(e)       at least one onsite program review visit by program or fiscal staff of the Education Department; and
(f)         submission for approval of the school’s procedures regarding behavioral interventions, including, if applicable, procedures for the use of aversive behavioral interventions.
5.         Subparagraph (iv) of paragraph (3) of subdivision (a) of section 200.7 of the Regulations of the Commissioner of Education is amended, effective June 23, 2006, as follows:
(iv)       Schools may be removed from the approved list five business days after written notice by the commissioner indicating that there is a clear and present danger to the health or safety of students attending the school, and listing the dangerous conditions at the school, including, but not limited to, evidence that an approved private school is using aversive behavioral interventions to reduce or eliminate maladaptive behaviors of students without a child-specific exception provided pursuant to section 200.22(e) of this Part or that an approved private school is using aversive behavioral interventions in a manner inconsistent with the standards as established in section 200.22 (f) of this Part.
6.         Paragraph (8) is added to subdivision (b) of section 200.7 of the Regulations of the Commissioner of Education, effective June 23, 2006, as follows:
(8)       Except as provided in subdivision (e) of section 200.22 of this Part, an approved private school, a State-operated school, or a State-supported school is prohibited from using corporal punishment and aversive behavioral interventions to reduce or eliminate maladaptive behaviors of students.
7.         Paragraph (6) is added to subdivision (c) of section 200.7 of the Regulations of the Commissioner of Education, effective June 23, 2006, as follows:
(6)        Policies and procedures relating to the use of aversive behavioral interventions. Not later than August 15, 2006, a private school that proposes to use or to continue to use aversive behavioral interventions in its program shall submit its written policies and procedures on behavioral interventions to the Department with certification that the school’s policies, procedures and practices are demonstrably in compliance with the standards established in section 200.22(f) of this Part. Any school that fails to meet this requirement shall be immediately closed to new admissions of New York students and shall be prohibited from using aversive behavioral interventions with any New York State student placed in such program. Failure to comply with this requirement may result in termination of private school approval pursuant to paragraph (3) of subdivision (a) of this section.
8.         A new section 200.22 is added to Part 200 of the Regulations of the Commissioner of Education, effective June 23, 2006, as follows:
§ 200.22         Program standards for behavioral interventions.
Behavioral intervention plans shall be provided in accordance with this section and those other applicable provisions of this Part and/or Part 201 that are not inconsistent with this section.
(a)       Assessment of student behaviors. For purposes of this section, an assessment of student behaviors shall mean a functional behavioral assessment (FBA), as such term is defined in section 200.1(r) of this Part.
(1)       A FBA shall be conducted as required in section 200.4 of this Part and section 201.3 of this Title.
(2)       The FBA shall, as appropriate, be based on multiple sources of data including, but not limited to, information obtained from direct observation of the student, information from the student, the student’s teacher(s) and/or related service provider(s), a review of available data and information from the student's record and other sources including any relevant information provided by the student’s parent. The FBA shall not be based solely on the student’s history of presenting problem behaviors.
(3)        The FBA shall provide a baseline of the student's problem behaviors with regard to frequency, duration, intensity and/or latency across activities, settings, people and times of the day and include the information required in section 200.1(r) of this Part in sufficient detail to form the basis for a behavioral intervention plan for the student that addresses antecedent behaviors, reinforcing consequences of the behavior, recommendations for teaching alternative skills or behaviors and an assessment of student preferences for reinforcement.
(b)       Behavioral intervention plan. The CSE or CPSE shall consider the development of a behavioral intervention plan for a student with a disability whenever the student exhibits persistent behaviors that impede his or her learning or that of others, despite consistently implemented general school-wide or classroom-wide interventions; when the student’s behavior places the student or others at risk of harm or injury; when the CSE or CPSE is considering more restrictive programs or placements as a result of the student’s behavior; and as required pursuant to section 201.3 of this Title.
(1)       In accordance with the requirements in section 200.4 of this Part, in the case of a student whose behavior impedes his or her learning or that of others, the CSE or CPSE shall consider strategies, including positive behavioral interventions and supports and other strategies to address that behavior. If a particular device or service, including an intervention, accommodation or other program modification is needed to address the student’s behavior that impedes his or her learning or that of others, the IEP shall so indicate. A student’s need for a behavioral intervention plan shall be documented on the IEP and such plan shall be reviewed at least annually by the CSE or CPSE.
(2)        Except as provided in subdivision (f) of this section, a behavioral intervention plan shall not include the use of aversive behavioral interventions.
(3)        The behavioral intervention plan shall identify:
(i)         the baseline measure of the problem behavior, including the frequency, duration, intensity and/or latency of the targeted behaviors. Such baseline shall, to the extent practicable, include data taken across activities, settings, people and times of the day. The baseline data shall be used as a standard to establish performance criteria and against which to evaluate intervention effectiveness;
(ii)        the intervention strategies to be used to alter antecedent events to prevent the occurrence of the behavior, teach individual alternative and adaptive behaviors to the student, and provide consequences for the targeted inappropriate behavior(s) and alternative acceptable behavior(s); and
(iii)       a schedule to measure the effectiveness of the interventions, including the frequency, duration and intensity of the targeted behaviors at scheduled intervals.
(4)       Progress Monitoring. The implementation of a student’s behavioral intervention plan shall include regular progress monitoring of the frequency, duration and intensity of the behavioral interventions at scheduled intervals, as specified in the behavioral intervention plan and on the student's IEP. The results of the progress monitoring shall be documented and reported to the student's parents and to the CSE or CPSE and shall be considered in any determination to revise a student's behavioral intervention plan or IEP.
(c)        Use of time out rooms. (1) Each school which uses a time out room as part of its behavior management approach shall ensure that the school’s policy and procedures on the use of the time out room are developed and implemented consistent with this subdivision, including the physical and monitoring requirements, parental rights and IEP requirements for students with disabilities.
(2)       A student’s IEP shall specify when a behavioral intervention plan includes the use of a time out room for a student with a disability, including the maximum amount of time a student will need to be in a time out room as a behavioral consequence as determined on an individual basis in consideration of the student’s age and individual needs.
(3)       Except for emergency interventions, the use of a time out room shall only be used in conjunction with a behavioral intervention plan that is designed to teach and reinforce alternative appropriate behaviors.
(4)       Parents shall be informed prior to the initiation of a behavioral intervention plan which will incorporate the use of a time out room. Upon request, parents must be shown the physical space that will be used as a time out room.
(5)       The physical space used as a time out room shall provide a means for continuous visual and auditory monitoring of the student. The room shall be of adequate width, length and height to allow the student to move about and recline comfortably. Wall and floor coverings should be designed to prevent injury to the student and there shall be adequate lighting and ventilation. The temperature of the room shall be within the normal comfort range and consistent with the rest of the building. The room shall be clean and free of objects and fixtures that could be potentially dangerous to a student and shall meet all local fire and safety codes.
(6)       The time out room shall be unlocked and the door must be able to be opened from the inside. The use of locked rooms or spaces for purposes of time out or emergency interventions is prohibited.
(7)       Staff shall be assigned to continuously monitor the student in a time out room. The staff must be able to see and hear the student at all times.
(8)       The school shall establish and implement procedures to document the use of the time out room, including information to monitor the effectiveness of the use of the time out room to decrease specified behaviors.
(9)       For an education program operated pursuant to section 112 of the Education Law and Part 116 of this Title, if a provision of this section relating to use of time out rooms conflicts with the rules of the respective State agency operating such program, the rules of such State agency shall prevail and the conflicting provisions of this section shall not apply.
(d)       Emergency use of physical restraints.
(1)       The use of physical force to restrain a student from engaging in behaviors shall not be used as a substitute for systematic behavioral interventions that are designed to change, replace, modify or eliminate a targeted behavior.
(2)       Staff who may be called upon to implement emergency interventions shall be provided with appropriate training in safe and effective restraint interventions.
(3)       Emergency use of physical restraints shall be used only when no other methods of controlling the student's behaviors would be effective.
(4) For an education program operated pursuant to section 112 of the Education Law and Part 116 of this Title, if a provision of this section relating to the emergency use of physical restraints conflicts with the rules of the respective State agency operating such program, the rules of such State agency shall prevail and the conflicting provision of this section shall not apply.
(e)        Child-specific exception to use aversive behavioral interventions to reduce or modify student behaviors.
(1)        (i) Effective on or after October 1, 2006, whenever a CSE or CPSE is considering whether a child-specific exception to the prohibition of the use of aversive behavioral interventions set forth in section 19.5(b) of this Title is warranted, the school district shall submit an application to the commissioner.
(ii)        For any student with an IEP in effect prior to October 1, 2006 that includes the use of aversive behavioral interventions, such application shall be submitted prior to the next scheduled review of the student’s IEP, but not later than October 1, 2006.
(2)       The application shall be in a form prescribed by the commissioner. The commissioner shall refer the application to an independent panel of experts appointed by the commissioner or commissioner's designee. The panel shall be comprised of three professionals with appropriate clinical and behavioral expertise to make such determinations.
(3)       The panel shall review the written application; the student's IEP; the student's diagnosis(es); the student’s functional behavioral assessment; any proposed, current and/or prior behavioral intervention plans for the student, including documentation of the implementation and progress monitoring of the effectiveness of such plans; and other relevant individual evaluations and medical information that allow for an assessment of the student’s cognitive and adaptive abilities and general health status, including any information provided by the student’s parent.
(4)       The panel's recommendation to the CSE or CPSE as to whether a child-specific exception is warranted shall be based on the professional judgment of the panel that:
(i)         the student is displaying self-injurious or aggressive behaviors that threaten the physical well being of the student or that of others and a full range of evidence-based positive behavioral interventions have been consistently employed over an appropriate period of time and have failed to result in sufficient improvement of a student’s behavior; or
(ii)        the student's self-injurious or aggressive behaviors are of such severity as to pose significant health and safety concerns that warrant the use of aversive behavioral interventions to effect rapid suppression of the behavior and a range of nonaversive prevention strategies have been employed and have failed to provide a sufficient level of safety.
(5)       The panel shall notify the school district and the commissioner of its recommendation as to whether a child-specific exception is warranted and the reasons therefor. For applications received pursuant to subparagraph (i) of paragraph (1) of this subdivision, the panel shall provide such notice within 15 business days of receipt of an application.
(6)       The CSE or CPSE shall, based on its consideration of the recommendation of the panel, determine whether the student's IEP shall include a child-specific exception allowing the use of aversive behavioral interventions. The school district shall notify the commissioner when a child-specific exception has been included in the student's IEP.
(7)       Any IEP providing for a child-specific exception allowing the use of aversive behavioral interventions shall identify the specific:
(i)         targeted behavior(s);
(ii)        aversive behavioral intervention(s) to be used to address the behavior(s); and
(iii)       aversive conditioning device(s) where the aversive behavioral intervention(s) includes the use of such device(s).
(8)        Nothing in this section shall authorize the use of aversive behavioral interventions without the informed written consent of the student's parent.
(9)       Any such child-specific exception shall be in effect only during the school year for which such IEP applies. If the student's IEP is amended, or a subsequent IEP is adopted, that no longer permits the use of aversive behavioral interventions, the school district need not notify the panel or the commissioner.
(10)     For an education program operated pursuant to section 112 of the Education Law and Part 116 of this Title, if a provision of this section relating to the use of aversive behavioral interventions conflicts with the rules of the respective State agency operating such program, the rules of such State agency shall prevail and the conflicting provision of this section shall not apply.
(11)     Coordination with licensing agencies. Nothing in this section shall authorize a school or agency to provide aversive behavioral interventions that are otherwise prohibited by the State agency licensing such program.
(f)         Program standards for the use of aversive behavioral interventions.
(1)       Applicability. (i) The requirements in this subdivision shall apply to a public school, BOCES, charter school, approved preschool program, approved private school, State-operated or State-supported school in this State and an approved out-of-State day or residential school.
(ii)        For an education program operated pursuant to section 112 of the Education Law and Part 116 of this Title, if a provision of this section relating to the use of aversive behavioral interventions conflicts with the rules of the respective State agency operating such program, the rules of such State agency shall prevail and the conflicting provision of this section shall not apply.
(2)       General requirements. Any program that employs the use of aversive behavioral interventions to modify an individual student's behavior as authorized pursuant to subdivision (e) of this section shall comply with the following standards:
(i)         The program shall provide for the humane and dignified treatment of the student and for the development of such student’s full potential at all times. The program shall promote respect for the student’s personal dignity and right to privacy and shall not employ the use of threats of harm, ridicule or humiliation, nor implement behavioral interventions in a manner that shows a lack of respect for basic human needs and rights.
(ii)       Aversive behavioral intervention procedures may be used only if such interventions are recommended by the CSE or CPSE consistent with the student’s IEP and behavioral intervention plan as determined by the CSE or CPSE.
(iii)      Aversive behavioral intervention procedures shall not be the sole or primary intervention used with a student and shall be used in conjunction with other related services, as determined by the CSE or CPSE, such as verbal or other counseling services, speech and language therapy and/or functional communication training.
(iv)       Aversive behavioral interventions shall be combined with reinforcement procedures, as individually determined based on an assessment of the student’s reinforcement preferences.
(v)        Aversive behavioral interventions shall be implemented consistent with peer-reviewed research based practices and shall include individualized procedures for generalization and maintenance of behaviors and for the fading of the use of such aversive behavioral interventions.
(vi)       The use of aversive behavioral interventions shall be limited to those self-injurious or aggressive behaviors identified for such interventions on the student’s IEP.
(vii)      Whenever possible, the use of aversive behavioral interventions shall apply the lowest intensity for the shortest duration and period of time that is effective to treat the problem behavior and employ strategies that increase the effectiveness of mild levels of aversive behavioral interventions. In the event the aversive behavioral intervention fails to result in a suppression or reduction of the behavior over time, alternative procedures shall be considered that do not include increasing the magnitude of the aversive behavioral intervention.
(viii)     The use of any aversive conditioning device used to administer an electrical shock or other noxious stimuli to a student to modify undesirable behavioral characteristics shall be limited to devices tested for safety and efficacy and approved for such use by the United States Food and Drug Administration where such approval is required by federal regulation. The magnitude, frequency and duration of any administration of aversive stimulus from such a device must have been shown to be safe and effective in clinical peer-reviewed studies. The use of automated aversive conditioning devices is prohibited.
(ix)       No program may use an aversive behavioral intervention on a student while the student is in a physical or mechanical restraint.
(x)        Behavioral intervention plans shall be designed and supervised by qualified professionals in accordance with their respective areas of professional competence. All personnel involved in the development, application, monitoring, data collection or review of a behavioral intervention plan that includes the use of aversive behavioral interventions shall be appropriately certified in accordance with the provisions of Part 80 of this Title and sections 200.6 and 200.7 of this Part
(3)       Human Rights Committee.   (i) Each school that uses aversive behavioral interventions with students shall establish a Human Rights Committee to monitor the school’s behavior intervention program for any student being considered for or receiving aversive behavioral interventions to ensure the protection of legal and human rights of individuals.
(ii)        The Human Rights Committee shall be comprised of individuals not employed by the school or agency, which shall include at least one licensed psychologist with appropriate credentials in applied behavior analysis; one licensed physician, physician’s assistant or nurse practitioner; one registered dietician or nutritionist; one attorney, law student or paralegal; and one parent or parent advocate. In addition, when the purpose of the Human Rights Committee meeting includes a review of an individual New YorkState student’s program, a representative of the school district or agency placing the student in the program and a representative of the Department shall be invited to participate.
(iii)       The Human Rights Committee shall meet at least quarterly to review, monitor and investigate the implementation of students’ behavioral intervention plans that include aversive behavioral interventions. A written report on the findings and recommendations of the Human Rights Committee regarding an individual student shall be provided to the CSE or CPSE of the student and to the agency that placed the student in the program.
(4)       Supervision and training requirements.   Any person who uses aversive behavioral interventions on students shall receive appropriate supervision, including direct observation. Appropriate training shall be provided on a regular, but at least annual basis, which shall include, but not be limited to, training on:
(i)         safe and therapeutic emergency physical restraint interventions;
(ii)        data collection of the frequency, duration and latency of behaviors;
(iii)       identification of antecedent behaviors and reinforcing consequences of the behavior;
(iv)       approaches to teach alternative skills or behaviors including functional communication training;
(v)        assessment of student preferences for reinforcement,
(vi)       assessing and responding to the collateral effects of the use of aversive behavioral interventions including, but not limited to, effects on a student’s health, increases in aggression, increases in escape behaviors and/or emotional reactions;
(vii)      privacy rights of students; and
(viii)     documentation and reporting of incidents, including emergency restraints and injuries.
(5)        Parent consent. Aversive behavioral interventions shall be provided only with the informed written consent of the parent and no parent shall be required by the program to remove the student from the program if he or she refuses consent for an aversive behavioral intervention.
(6)       Quality assurance reviews. The program’s use of aversive behavioral interventions, including a review of all incident reports relating to such interventions, shall be subject to quality assurance reviews to ensure that practices are clinically sound, supported by proper documentation and consistent with these program standards and the school’s policies and procedures as approved by the Department.
(7)        Progress monitoring. (i) The program shall provide for ongoing monitoring of student progress, including the collection and review of data and information. Such information shall include reports on the assessment of and strategies used to address any indirect or collateral effects the use of aversive behavioral interventions may be having on the student, including, but not limited to, increases in aggressive or escape behaviors, health-related effects and/or emotional reactions. The program shall submit quarterly written progress reports on the implementation of the student’s behavioral intervention program to the CSE or CPSE and to the agency that placed the student in the program.
(ii)        A school district that places a student in a program that uses aversive behavioral interventions with such student shall be responsible to ensure that the student’s IEP and behavioral intervention plan are being implemented. The CSE or CPSE shall convene at least every six months, or more frequently as needed, to review the student’s educational program and placement for any student for whom the CSE or CPSE has recommended the use of aversive behavioral interventions. Such review shall include the review of written progress monitoring and incident reports, at least annual observations of and, as appropriate, interviews with the student in the program and regular communication with the student’s parent.
(8)       Policies and procedures. Each school that proposes to use aversive behavioral interventions pursuant to a child-specific exception shall submit its policies and procedures consistent with this subdivision to the Department for approval prior to the use of such interventions.

Use of Aversive Interventions in New York State, US

Posted on August 22, 2006 by sandrasinclair

This legislation is a wake-up call for all of us, because laws can change quickly and dramatically which affect our children, no matter where we live.

New York recently passed a law to allow for use of aversive interventions on children if deemed absolutely necessary.

While the goal was to put parameters on how schools discipline and control special needs children, unfortunately the result was that aversives are now allowed ( electric shock, holding or tying children down, witholding of food, drink, sleep, clothing using noxious sprays to the face, painful tastes to the lips, locking them in rooms, etc. ) in certain circumstances.

In my opinion, this decision legalizes abuse in schools and residential facilities. Some basic human rights have been taken away from special needs children in New York, and unfortunately it reveals the darker side of how we regard children with special needs in general, in terms of their humanity and worth.

If a teacher in a typical school setting punished a student in any of these ways, it would be considered reprehensible. Not only would they be fired, but they would subsequently be criminally prosecuted for engaging in these same acts. How is it possible then, that these same punishments, considered reprehensible and intolerable, are condoned and protected under law for children with special needs?

I'm not an attorney, but I seem to remember something in <?xml:namespace prefix = u1 />US IDEA law that states that someone with a disability cannot be punished or disciplined for a behavior that is caused by their disability. With PDD or autism, behaviors such as flapping hands, repeating sentences, tantruming, biting oneself, and a multitude of other behaviors caused by PDD or autism should not be punished, under the IDEA law.

For example, no one would ever punish someone with a neurological disability such as Parkinsons, for shaking or trembling. You'd never hear “stop shaking!” or “quiet body!” Yet our children are constantly punished for behaviors that are caused by their neurological problem- their autism. The fact is that if they didn't have autism, they wouldn't be doing these things. A punitive ”hands down!” voice command when a child is flapping their hands, or a time-out for scripting lines from a video are some examples of punishing a child for a behavior that is caued by their autism. In my opinion, many schools are breaking IDEA law by punishing students for behaviors that are caused by their autism or other disabilities.

And now New York has the go-ahead to administer aversives to children with disabilities in certain circumstances, as determined by school personnel. In other words, whenever the teacher or administrator deems ”special circumstances” at the time. I can guarantee that children will be abused, and it will be sanctioned by the state. This is a decision that needs radical reversal, immediately.

Sandra Sinclair,www.autismvoice.com

To see the legislation, click here. (It is very long and very legal.)

TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW

Posted on August 7, 2006 by sandrasinclair

Another great article by Ellen Notbohm, specifically written for teachers.

Sandra Sinclair

www.autismvoice.com

TEN THINGS YOUR STUDENT WITH AUTISM WISHES

YOU KNEW

These ideas make sense for other kids too

Author’s note: When my article “Ten Things Every Child with Autism Wishes You Knew” was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. “Just what my daughter would say if she could,” said one mother. “How I wish I had read this five years ago. It took my husband and I such a long time to ‘learn’ these things,” said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child’s voice, a voice not heard often enough. There is great need – and I hope, great willingness – to understand the world as special needs children experience it. “Ten Things Every Child with Autism Wishes You Knew” became a book in 2005, and now the voice of our child returns now to tell us what children with autism wish their teachers knew.

1.Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can’t, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.

Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from “bad” behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don’t understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.

2. Never assume anything. Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can’t retrieve it today. Ask yourself:

Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I’m asked to do a math sheet, maybe I don’t know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.

Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn’t eat breakfast and am now famished.

3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes.

Or maybe I need to sit closer to you; I don’t understand what you are saying because there are too many noises “in between” – that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.

Ask the school occupational therapist for sensory-friendly ideas for the classroom. It’s actually good for all kids, not just me.

4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn’t so far physically removed that I won’t be able to rejoin the activity flow of the classroom smoothly.

5. Tell me what you want me to do in the positive rather than the imperative. “You left a mess by the sink!” is merely a statement of fact to me. I’m not able to infer that what you really mean is “Please rinse out your paint cup and put the paper towels in the trash.” Don’t make me guess or have to figure out what I should do.

6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I’d be better off helping the school secretary put together the newsletter.

7. Help me transition between activities. It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes – and build a few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.

8. Don’t make a bad situation worse. I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don’t mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:

· Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.

· Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior.

· Making unsubstantiated accusations.

· Invoking a double standard.

· Comparing me to a sibling or other student.

· Bringing up previous or unrelated events.

· Lumping me into a general category (“kids like you are all the same”).

9. Criticize gently. Be honest – how good are you at accepting “constructive” criticism? The maturity and self-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.

Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.

Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me.

Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.

Practice or role-play – show me—a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right “next time,” tell me right away.

It helps me if you yourself are modeling proper behavior for responding to criticism.

10. Offer real choices – and only real choices. Don’t offer me a choice or ask a “Do you want…?” question unless are willing to accept no for an answer. “No” may be my honest answer to “Do you want to read out loud now?” or “Would you like to share paints with William?” It’s hard for me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life.

Whenever possible, offer a choice within a ‘have-to’. Rather than saying: “Write your name and the date on the top of the page,” say: “Would you like to write your name first, or would you like to write the date first?” or “Which would you like to write first, letters or numbers?” Follow by showing me: “See how Jason is writing his name on his paper?”

Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can’t. When this happens, I won’t get as frustrated if I understand why:

“I can’t give you a choice in this situation because it is dangerous. You might get hurt.”

“I can’t give you that choice because it would be bad for Danny” (have negative effect on another child).

“I give you lots of choices but this time it needs to be an adult choice.”

The last word: believe. That car guy Henry Ford said, “Whether you think you can or whether you think you can’t, you are usually right.” Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I “can do it.” Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I’ve left your classroom.

Ellen Notbohm is author of the new book “Ten Things Every Child with Autism Wishes You Knew”, winner of iParenting Media’s Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s Choice Award, from which this article is adapted. A columnist for Autism Asperger’s Digest and Children’s Voice, her articles on autism have also appeared in numerous and websites. Your comments and requests for reprint permission are welcome at ellen@thirdvariation.com.

The Son-Rise Start-Up Program

Posted on July 21, 2006 by sandrasinclair

As some of you know, I'm currently attending the start-up Son-Rise program in NYC. All I can say is that the appoach is incedibly life-affirming, empowering, and effective for autistic children and their families.

What I'm seeing during this week is that each morning parents are coming back happier, with reports of surprising progress in terms of eye contact, connection with their child, and feelings of empowerment and enjoyment of their children. Of course it differs for each child, but many parents are surprised at these quick changes their children are making literally overnight, with just a few simple changes. Just speaking for myself, I saw an increased intensity of eye contact and connection with my son, and an increased desire to seek me out just after doing the changes for about a half hour. It gets you close to you child faster than anything else I've experienced.

Son-Rise has some similarities here and there to some other interventions I've experienced, but it differs in a few aspects — the child is seen as a gift and not someone that needs to be fixed, yet opportunities are constantly given for growth. Expecations of the potential for each child are extremely high, compared to what we've all been told, regardless of age or diagnosis. There is an incredible acceptance and respect for the whole child and the entire family. Also, nothing is forced on the child, and apparently this level of respect and acceptance gets initial results very quickly for many children.

The intervention philosophy and style may be strange for some, because it all starts by accepting the child totally, including their autism, and joining the child fully by participating in their “stimming” behaviors without trying to stop them or redirect them. This is not done to manipulate, but rather, to fully appreciate, enjoy, and engage with your child by accepting them as they are. Then as opportunities present, the child is gently challenged more and more to expand their awareness, flexibility, frienship skills, communication, and knowledge. Everything at the beginning is based on trusting your child to lead and teach you, and then as time goes on, the parent takes more and more of the lead in the interaction.

I can see this intervention used throughout a child's program, and I think that you can creatively use it in conjunction with some other interventions as well, such as RDI and speech, etc. With RDI, I can see it as really helping to smooth out the transition in some of the early stages. And I can also see it as a much more organically easy way to do a program such as RDI, by being able to let go and allow some of those goals to happen more naturally.

I don't think that this program conflicts with behavioral philosophy, but it does conflict with most present-day behavioral programs. What I mean is that I can see Son-Rise definitely uses some basic behavioral principles in some of what they do, but the difference is in what they're trying to accomplish — (creating a happy independent adult with relationships, self-acceptance and self-esteem), the accepting attitude behind it, and the emphasis on social and communication outcomes that are truly important long-term, rather than on short-term fixes or compliance issues.

The family and child's self-esteem and happiness is put first in this intervention. It's a healing balm for the spirit of a family that's been challenged by autism. I highly recommend it, and hope that all families with an autistic child or adult might have an opportunity to experience the Son-Rise program for themselves one day.

http://www.autismtreatmentcenter.org/

– Sandra Sinclair, www.autismvoice.com

Autism Every Day – A MUST-SEE video

Posted on June 25, 2006 by sandrasinclair

http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

This is an ABSOLUTE MUST-SEE video for anyone that is affected by autism in any way. It's also a fantastic video for the general public to educate about autism and the associated behavior they may see on the street. It is the first video I've ever seen that really explains the day-to-day life of parents with children on the autism spectrum in a way that brought tears to my eyes. We all live it, but usually the general public doesn't understand at all and can be quite judgmental.

The mothers in this video explain what they go through – how their lives have changed, the stresses on their family, how often people on the street don't understand that these children are not being bad, and the mothers are not abusive. It's just so difficult to explain to a total stranger why your 8 year old is throwing themself on the ground, screaming and crying. I've been there.

Take a look. It's a 13 minute video, and there's also an optional 3 minute video with Imus introducing it, if you'd like to see that too. The video is called Autism Every Day, and it's on the Autism Speaks website:

http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

Autism Voice

Autismvoice is an autism podcast and weblog for parents of children with autism, Aspergers, PDD, PDD-NOS, and related autism spectrum disorders.

Yearly Archives: 2006

Son-Rise New Frontiers Program

Parenting Autism- Getting Past the Embarrassment

Next time you're in such a situation, ask yourself this question-

If your child could do better right now, he would. In time he will
do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.

Sandra Sinclair

www.autismvoice.com

Parenting Autism- Getting Past the Sadness

A letter to explain your child's autism to other children

Parenting Autism – Being Your Child's Best Resource

Use of Aversive Interventions in New York State, US

Use of Aversive Interventions in New York State, US

TEN THINGS YOUR STUDENT WITH AUTISM WISHES YOU KNEW

The Son-Rise Start-Up Program

Autism Every Day – A MUST-SEE video

Next time you're in such a situation, ask yourself this question-

If your child could do better right now, he would. In time he will do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.

Sandra Sinclair

If your child could do better right now, he would. In time he will
do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.