A Mom Takes on Behavioral Disability: A Conversation

I had a call from one of my friends this week and she allowed me to share it with you:

Well, it happened again. Mr D was outside playing with a couple of kids and before you know it he was off at a dead run down the middle of the road. I end up chasing him down the street or intervening in some other totally inappropriate behavior at least 3 times every day...

Sounds like a lot of work....

Oh, it's a lot of work all right. But that's not what I hate about it. Running and intervening I can do. What kills me--and I talk with my husband about this all the time--is the response of the people in our neighborhood--or at the store or anywhere. The looks and the judgment--this is the hardest thing I have ever done.

People are rough?

Well, not outright rough, but I can feel that everyone has some opinion. Whether they're thankful they aren't me, or thinking I should just let him run, or thinking I should just keep him in the house. They don't understand because they don't have a relationship with him or me. His behavior doesn't help. They don't get to know him, he is just scary to them.

Even the kids. I know when they hear the "R"word it's Mr D's face they see. They don't know him. They don't see how much he has developed over time. No one knows what he gains from being out in the neighborhood. And homeschooling keeps him separate too.

What does he gain?

I have a choice with Mr D: building his own little world away from everyone or teach him to live in the world. But I can't teach him ABOUT the world--I have to teach him in it. And I can't just teach him compliance--he needs to make good choices not just be controlled. He is learning 'always' and 'never' and practicing choices and what is expected...

He is still a child, still developing. And we are alone working for his progress. Believing in it.

What they don't know, what no one knows is that after 500 or 5000 or 30,008 repetitions he will learn. He does learn. He will stop running in traffic, entering homes, being inappropriate. He will grow into better interactions. No one sees his potential. He reads at grade level, he does math in his head--no one knows that. They see his behavior and see only limitations without hope--that he will never change.

And homeschooling?

If I could send him to school without restraint and without seclusion he would go back tomorrow. But I can't and what would he learn from that? My husband and I can't sign off on that. Our income is affected--our life has a very different focus, but that's the way it is.

No one can see potential through his behavior. no one can envision a life of independence--adventure--worth.... They see where he is now. They think it is too difficult to build something better--with what we have. They want compliance before they will invest in him. They have a vision of compliance with maybe some life-skills thrown in.

They see his behavior as a barrier--I see it as motivation. I take it on because no one else can. Or will.

He is not "other" and our family is not "less" just different. And everyone's low expectations and expressions of non-faith weigh me down. Everyone judges.

What would help?

Optimism. Expressions of expectation--looking for success. Recognizing success. Questions--asking me what I think Mr D is learning. Acceptance.

I notice that when many people talk about the personhood and rights of people with disabilities they seem to almost exempt those with behavioral issues. I think people have a hard time thinking new ways about these issues. I think my friend and her family exemplify these beliefs. Though it is not easy and goes against the tide in so many ways, they do not let go of their belief in their son.

(My friend requested a picture of Madonna boxing, but I had no luck... any ideas???)

Aversives and Disability Advocacy: Current events

(As much as I liked WHAM 13 News video about the use of aversives here in NY, this video had to go--I just couldn't imbed it so it wasn't automatically running... This video showed tiny concrete time-out rooms in a Rochester area school and showed documentation that the rooms were used for punishment rather than time-out for one child. The child had been moved there during a classroom incident and was there until the end of school. The next morning he was brought back there without an incident to "finish his time" according to the video.)

Above is the latest video about aversive therapies in NY State. I have written about this topic before (three articles in 2006 here, here, and here.) For me one of the most disturbing images in the whole video was the hallway full of time out rooms with decorated doors—to me this gives the message that the school just knows the kids are going to be bad—bad behavior is just a normal and expected part of the day there.

I know that people with some disorders struggle with safe and appropriate behavior, but I think schools and programs should be set up to convey the message “we expect things to improve” rather than “we expect things to deteriorate.” I found the image of all of those doors discouraging. (One of my friends pointed out that from the outside those rooms looked like fun places--she thought this was disingenuous...)

I have written about the fact that schools are the only agencies in NY that are allowed to employ aversive techniques to modify behavior. Parents who put their child in time-out for more than 3 hours in a closet lose custody in this state. Apparently solitary confinement is legal in prisons, but even there it is pretty strictly regulated.

I have written before about the power that professionals have to create the reality that is then punished, and the fact that having the aversive on hand to use keeps professionals from finding newer, better solutions.

It is time for NY to create a consistent ethic for the treatment of all of its citizens without exceptions.

Write to your legislators, write letters to the editor!

My Testimony

As a human being, the list of aversive behavioral therapies that NY state has prohibited makes my skin crawl because they are so abusive. I am proud that my state has a committed to being more humane toward all of our citizens. Prohibiting these actions was the right thing to do and it is very upsetting that the Board of Regents is now developing plans to allow exceptions to these prohibitions.

As a parent of a child with a disability I am by turns infuriated and terrified that any of these horrifying acts could happen to my child in the name of therapy--with my state's permission.

As an RN and citizen of the state I am also wondering about the regulatory inconsistencies allowing these exceptions creates in our state:

• The NYS Health Department has very strict rules about treatment of people who live in the state's nursing homes. Any of the 'aversive behavioral therapies' listed in the new regulations would qualify as abuse in a nursing home and would lead to prosecution, fines, jail time, and loss of licensure for individuals and even institutions.
• The NYS Commission of Quality Care has similar, strict rules on behalf of adults with disabilities who live in the state's many homes and group homes.
• The NYS Mental Health Office enforces the same standards to protect people in the state who have mental illness.
• Adult Protective and Child Protective Services would prosecute caregivers or parents who engaged in any of these aversive/abusive activities in the home resulting in jail time and loss of custody.
• In fact all nurses, doctors, social workers, police, teachers, school personnel, and others who hold professional licenses in NYS are "mandated reporters" trained and required by law to recognize and report signs of child abuse. All of the "therapies" that appear in the board of regents prohibited list also appear in the list of activities licensed professionals are required to report.
• People in prison who have been convicted of crimes are also protected from these aversive strategies by regulations in NYS.
• Even animals in NYS are protected by law from the 'behavioral interventions' listed in this regulation.

Allowing exceptions to these necessary prohibitions only for children with disabilities puts these vulnerable people on the bottom of the value totem-pole in our state. It might even be said that these exceptions--making children with disabilities the only legal recipients in the state of these reprehensible behaviors--creates a hostile environment for children with disabilities in our state.

The fact that the effectiveness of these "therapies" is not supported by research supports the idea that exceptions to these prohibitions is nothing more than legitimizing cruelty.

NYS should set a standard for the treatment of its citizens that precludes cruelty and abuse for all, without exception.

Where there are problem behaviors we need to commit our resources, time and energy into finding or creating solutions that do not resort to tactics that would be construed as torture under any other circumstance.

Hurling Rant

In the recent NYS rulings about aversive/abusive behavioral interventions one of the activities that is prohibited, but may be allowed for some children is "hurling." Yes, you read that correctly, hurling.

Taken together the list of aversive behavioral therapy options sounds overwhelmingly evil. Considered singly the very idea of any of these methods as 'therapy' under any circumstance or for any child seems ludicrous.

When I first read about about hurling I thought they were referring to the ice sport where they slide the big tea kettle toward a big target on ice while people energetically sweep it's path. We were all subjected to hours of this during the Olympics. It wasn't my idea of entertainment, but didn't seem particularly abusive to me--it had a rather soothing (nearly anesthetic) effect...

But no, that sport is curling. Hurling refers to throwing a person--in this case, to teach them a lesson. So here are some of the questions I would have to ask about hurling:

• Who writes the plan that would include hurling? Who is the "hurling expert"? What is their certification?
• Is this done primarily by larger people to smaller people? Or is there some sort of hurling catapult on the market?
• What circumstances make hurling appropriate? What are the parameters of this plan? Where are people hurled? How far? How often?
• What does the research show about the effectiveness of hurling therapy? Who did this research? Who funded it?
• What liability is a therapist, school district, organization, or state that endorses this taking on? Is there special protective clothing for children we expect to hurl?
• How is it decided which children would benefit from a hurling plan? What benefits are expected? Are there other groups of children, beyond those with disabilities, that we feel would benefit from hurling strategies?

The questions are endless and make it clear to me that hurling can never be acceptable. Each of the prohibited activities on this list stand up to examination as badly as hurling does pointing me to the same conclusion about them--they are wrong. There can be no exceptions to the prohibition against aversive behavioral therapies. These activities should be prosecuted, never prescribed.

Whose Problem Behavior?

(The next three posts are a small series in response to the NYS Board of Regents proposed exceptions to their regulations on the use of aversive/abusive techniques in schools. I hope they inspire you to act on this issue!)

New York State has recently released regulations defining and prohibiting aversive behavioral interventions. This is a wonderful thing. The same paper, however, states that there could be exeptions to these regulations, that it would be ok to use the appalling list of abusive strategies on some children.

This is unacceptable.

My youngest daughter has Down syndrome. Generally speaking she is a good kid, she does have a temper and can have cranky times (she's not 'always happy' :) but usually she is a pleasant person that people like.

Part of her personality is that she likes familiarity and structure--she will not go willingly from what she sees as order to what she sees as disorder. In the language of disability she has trouble with transitions. This isn't usually a big problem because when she is resisting moving from one activity to another she can quickly be referred to her schedule or someone nearby can say something like "It's time for the assembly," or "Remember, we have PE on Mondays."

Hearing this, my daughter will tap herself on the head like she should have had a V8, say something like, "Oh yeah, I almost forgot!" and step into the next activity without any further difficulty. In new situations she likes it if someone tells her what to expect. (Most people do, that is why plays and even church services have programs!)

Most of the people in my daughter's life have no problem with this. In fact most of us rely on our own systems of calendars, lists and programs to manage transitions ourselves so sharing our info with my daughter seems pretty easy.

A few years ago, however, there was a new staff person in my daughter's classroom. This gal introduced herself to me by explaining that she knew that "People with Down syndrome are very stubborn," and asking me what to do when she runs out of the building. I laughed and told her if she ran out of the building to call me as nothing like that had ever happened before. I should have known this was a sign of trouble, but I thought once she got to know my daughter things would be fine. Silly me.

This person saw my daughter's transition-related resistances as a reason for punishment rather than explanation. So instead of saying that it was time for PE, and perhaps teaching her to ask what was next on the schedule, she would give her a 'consequence' for disobedience. The results of this little change led to a disastrous year.

Since my daughter's need to understand the structure of her day wasn't being met her little balking behaviors became bigger, more dramatic and less appropriate (the way you raise your voice when someone doesn't hear you.) Each of these escalations led to more disciplinary actions.

Much more discipline and less clarity of structure in her day led to expressions of anger and crankiness (remember she is not always happy!) which led to worse resistance behaviors which brought even more consequences... The cycle went on and on until one day I actually got that call about her running out of the school.

For the first time in her life we were having conversations about appropriateness of placement, sticker systems, time-out rooms, and behavioral plans. Fortunately, it was the end of the schoolyear and the next year we had different staff in her class. All of the "discipline issues" dissappeared in the new class making it obvious in a very scary and clear way that "her behavior problems" were not hers alone.

The talk in NYS about the possible use of aversive/abusive methods as therapy scares me to death. When I express this, people who know my daughter assure me that this doesn't apply to her at all. But the people who knew her a few years ago did not feel that way. Different people see her differently and this subjective assessment could allow someone to expose her to abuse in the name of therapy someday...

What would be happening today if the same staff had remained with her past that year???

I hope your blood is running as cold as mine is right now. There can be no exceptions.