Q & A - How to Manage Behavioral Disabilities

[cobyseven]

Interview Q & A from the CEC

www.disabilityscoop.com/2009/03/02/behavior-800-pound-gorilla/2374/

If you feel like behavior issues are taking over your life, you’re certainly not alone. With disability often comes communication troubles that manifest into undesirable outbursts.

But rest assured, behavior doesn’t have to hold you hostage any longer. In this installment of Scoop Essentials, behavior specialist Deborah Lipsky shows you how to distinguish a tantrum from a meltdown and how to control and prevent both. A consultant who regularly works with schools and individuals to develop behavior plans, Lipsky also speaks from personal experience. She has autism and learned to self-regulate her own behavior.

Check out what Lipsky has to say and then click here to submit your own questions to her.

Disability Scoop: What is behind behavior? Why do people exhibit extreme behaviors?

Deborah Lipsky: Every behavior is a form of communication. When a negative behavior is displayed, it means the person is experiencing frustration and a communication breakdown has occurred. Sometimes it’s the other person not understanding what the person with the disability is trying to convey or sometimes it’s the other person not understanding their disability.

Disability Scoop: When a person displays negative behaviors, how can you tell if it’s their disability talking versus behavior doing the talking?

Deborah Lipsky: It depends whether you’re dealing with a tantrum or a meltdown. A meltdown is when behavior is beyond the individual’s control. Things have been spiraling out of control. They are overwhelmed at the situation and they have no control. Generally with a meltdown the person is not looking for a direct response from you. Afterwards there’s often a sense of remorse and regret.

A tantrum is a manipulative behavior, a scheme for a person to get their own way. Once the person gets their own way, there’s often a sense of satisfaction. It’s really hard to distinguish between a meltdown and a tantrum because sometimes a tantrum can lead into a meltdown.

For true manipulative behavior there must be a consequence. There should be no excuse for any disability for behaviors like kicking, screaming and breaking things. Those are inexcusable and not part of anybody’s disability. It’s just poor anger management.

Disability Scoop: How can families go about setting up and implementing a behavior plan that works?

Deborah Lipsky: That’s a very common question. The number one problem with any behavioral plan is a lack of consistency. What we need to do is have a team approach so there is consistency at home, at school and anywhere else the person goes.

One of the problems with behavior plans is that we focus only on dealing with the behavior. Instead, look at the underlying causes of the behavior. Why is Johnny throwing a fit? If you can identify the problem and correct it, you can then deal with the behavior. A lot of behavior plans deal with the symptom and not the cause.

Disability Scoop: So what are the keys to making a plan that’s going to address the cause, not just the symptoms?

Deborah Lipsky: A successful plan is tailored to the individual. It understands and addresses the individual’s needs. If possible, it’s best if the individual can participate in creating the behavior plan. People with disabilities can offer a lot of insight but because they’re the ones with the disability, everyone else seems to know more about what they need than they do.

When addressing negative behavior, the idea is to extinguish the behavior and replace it with another behavior. Say for instance, Johnny has a meltdown when it’s time for gym. We want to find out why. Is it just that he doesn’t like gym or is there a problem because of gym? Maybe it’s too loud. So perhaps instead of going into a large auditorium to do gym, Johnny can go into a smaller room. Then, as he successfully manages the behavior, offer him some kind of reward, an incentive.

A good behavior plan takes the particular situation into account. What you would do in school, or at home or in a public setting may be different, but the underlying structure should be the same.

As a general guideline, if there is a true meltdown there should be no reward or consequence at all. If it is a behavioral tantrum then there should be an extreme consequence.

Disability Scoop: You touched before on the idea of a reward. Are rewards important?

Deborah Lipsky: Rewards can be something as simple as praise. “Good job. You did that great. You’re really growing.” It doesn’t necessarily have to be a physical, tangible reward.

The reward is a double-edged sword. You have to be extremely careful with a reward because it might come to the point where if you try to take the reward away, you have an even bigger problem. What happens with a lot of parents is that in order to get Johnny to go to school, they promise to take him to McDonald’s to get chicken McNuggets. That works great for the first few times, but soon Johnny is expecting and demanding chicken McNuggets every time he gets into the vehicle. And that’s not a good thing.

Whether or not you use rewards and how you do so really depends on each individual and their strengths and limitations.

Disability Scoop: What can you do if someone’s having a behavior problem?

Deborah Lipsky: A lot of times individuals will try to start calming themselves. I’m autistic and when I get nervous I start hand flapping or rocking. If you have an individual who’s engaging in some kind of self-stemming behavior that’s not hurting anyone, let them. If you try to stop them, it just adds to the stress and makes it worse.

If a person is having a meltdown, adrenaline is coursing through their veins. Unless you deal with the adrenaline, you’re going to have an explosive behavior, so you want to do whatever calms the individual down. It’s really important to know the individual.

One of the things that I recommend to include in behavior plans is that when someone has a meltdown, one person is assigned to them, not five people. When there’s a meltdown, everybody runs to get the principal, the school nurse, the psychologist. But it’s too many cooks in the kitchen.

Disability Scoop: What can you do after a behavior problem to calm the person and prevent a recurrence?

Deborah Lipsky: The first mistake a lot of people make is that immediately after the behavior they want to sit down to discuss it. The individual is going to need time to process what happened. I recommend waiting a day or so until the individual with a disability is in a better frame of mind and able to look at things clearer.

The whole point is to put power back into these individuals so they are able to identify when they’re getting upset. The goal is for them to learn to self-regulate their behavior.

Disability Scoop: How can you handle a behavior problem or meltdown that happens in public? What about ones that happen in the home?

Deborah Lipsky: Handle tantrums the same at home as you do in public. You have to set consequences and stick to them.

In terms of meltdowns, it’s different at home than in public because at home you have a lot more safety nets. If a person is having a meltdown at home, it’s best to let them go to their room to quiet down. But if they’re in public, that’s not an option and that’s where the danger comes in. Particularly in autism, a lot of kids and adults will attempt to run to a safe place if they feel threatened. It’s called bolting. And because they’re not cognitively aware of what’s going on, they can get into a lot of trouble by running into traffic or finding themselves in unsafe situations.

One of the things that I do when I’m in public is I wear something that identifies me as autistic and indicates what to do if I’m having trouble. Every individual with a disability should have their own one-page behavior plan with a list of things that can calm them down. They should take it with them and perhaps have it on file with the police department or with their school or anyone they come in contact with.

Disability Scoop: Are there certain behaviors that aren’t controllable no matter how hard you try?

Deborah Lipsky: In a meltdown the person is no longer able to rationalize anything and they go into an instinctual fight response. There’s nothing you can do to make those behaviors less demonstrative because the person has no control over them.

But in a tantrum situation, you can work to regulate the behavior. If the person starts kicking or hitting someone, help them to redirect that aggression to another physical activity like punching a pillow or going for a walk.

Disability Scoop: What about compromise and negotiation? When is it okay to compromise and when should you stick to your guns?

Deborah Lipsky: Compromise and negotiation may work, but you have to know the individual you’re dealing with. If you’re dealing with a teenager, compromise may not work because if you give them a little, they’re going to want a lot more. Likewise, if you’re dealing with an individual who’s severely cognitively challenged, compromise and negotiation may not work because often people in that population need things to be black and white.

Disability Scoop: There are families out there for whom behavior has become so dominate in their lives that they’re scared to do anything. What do you recommend?

Deborah Lipsky: Doing nothing is the worst thing you can do. If you’re having difficulties handling a behavior, seek help from professionals. Look to the case manager, the psychologist, the social worker and the speech pathologist. Get a team meeting together. Don’t be afraid to ask for help for severe behaviors that you cannot manage. If you don’t, you’re not doing your child any favors. You’re only making it worse. All aggressive behaviors that aren’t dealt with will escalate. They will not go away by themselves.

Disability Scoop: What about adults who still have behavior problems? Is it ever too late to control or change negative behaviors? How should you approach a teen or adult differently than a child?

Deborah Lipsky: It’s never too late. When trying to change behavior patterns, you have to modify to the age and cognitive ability of the individual, but the principles would be the same. To change a behavior you would look at what causes the behavior, what the person does and what the consequences of the behavior are. Offer a reinforcement or a consequence based on what would make a difference in that individual.

Disability Scoop: What resources are available if you’re struggling to deal with behavior issues?

Deborah Lipsky: The first resource would be the person’s case manager or their social worker. If the individual is not in the system, or if they’re not diagnosed and they don’t have an IEP or any type of school plan, the next best thing is to go to your local mental health center or go to the local department of human services. Tell them your situation and say, “I don’t know where to turn.”

Disability Scoop: What about medication? When should medication be considered and is it necessary?

Deborah Lipsky: Medication should never be the first line of defense in handling a behavior because you’re not handling it. You’re just subduing the behavior. You’re putting a band-aid on an amputation. Once you remove the medication, the behavior will return. That’s because medication doesn’t teach the individual to self-regulate.

That said, there may be individuals who can benefit from medication for shorter periods of time or who need medication to help control behaviors as the result of another illness. For instance, people with bipolar disorder may have some extreme behaviors in their manic phase that medication can alleviate.

But just putting Johnny on Prozac because he has explosive behaviors does nothing but ignore the problem. You need to find out why the behaviors occur. This is done through simple observation and by keeping a diary. If everyone who works with Johnny makes notes in a journal, you will see a pattern develop. Then you can take steps to prevent behavior problems and help Johnny learn to self-regulate. Medication is not a way to regulate a person. It just dumbs down the individual.

Disability Scoop: What about therapy?

Deborah Lipsky: Therapy is wonderful. Occupational therapists in particular deal with a lot of behaviors. They have all kinds of tricks and tools that individuals can use to calm themselves down in stressful situations.

However, one-to-one mental health therapy with a counselor or psychologist is not always as successful. People with autism, in particular, are disconnected from their feelings. When they have a problem, they don’t want to talk.

Disability Scoop: If you’re an individual with a disability who has trouble controlling emotions or behavior, what can you do?

Deborah Lipsky: One of the things I do if I’m having a sensory issue is try to remove myself from the situation. I might go to the bathroom just to quiet down. Or I’ll call a friend and have them talk me through it. I think a phone tree for adults with disabilities is crucial. It’s also good to have backup plans. Whenever I leave the house to go to the store or the airport or wherever, I have backup plans for everything. What if? I try to script out as many possible plans and scenarios before I leave home so that I’m prepared. The most important thing is to know yourself and know your limits so that you can plan accordingly.

Deborah Lipsky’s book, Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism, came out this month.

[sharie001]

This is good to know info! Do you mind if I post a link to this thread in my greatschools group?

[healthy11]

Sounds like a book I'll have to add to my reading list; thanks for mentioning it, Coby!

[wimom]

Excellent discription of the difference between a tantrum and a meltdown. Thanks Colby, I'll have to pick up the book.

[Mayleng]

Mar 4, 2009 16:00:12 GMT -5 sharie001 said:

This is good to know info! Do you mind if I post a link to this thread in my greatschools group?

Of course you can.

[healthy11]

I know it happens frequently, but I get hungry every time I see people refer to Coby as Colby, since I think of cheese....

[ldparent]

you really are from Wisconsin healthy, not just WIMOM. you just happen to live further south......

[cobyseven]

HAHA....I see lots of Colby's......

I feel LD when I read on the boards sometimes. I skim so I miss things or misinterpret. It took me a year to start thinking of mamak as mama k, not ma mak. I guess I automatically decode traditionally!

I haven't had to deal with behavioral issues in my kids, but I thought this article had a good way of pointing out the components. I suspect it's too emotional to do that at the time.

[healthy11]

ldparent, my husband went to college in WI; maybe that's the connection?

[cobyseven]

Behavioral Q & A from Deborah Lipsky


www.disabilityscoop.com/2009/05/19/behavior-game/3304/

Tackling behavior is no easy task. So when we brought you Scoop Essentials: Behavior, Taming The 800-Pound Gorilla, you inundated us with questions. Now, behavior specialist Deborah Lipsky, who has autism herself, is back with answers to more of your questions. She tells you what’s going on in the mind of a frustrated individual and lets you in on the secrets to developing a behavior plan that will really work.

I have a student who is diagnosed with autism and is in third grade (9-years-old). He does not throw tantrums (exactly). He will just refuse to work! We set up a behavior plan to help him earn rewards for working and behaving. We reduced the amount of work he needs to do. This worked for a while but now he wants to take homework home and do nothing here at school. We are concerned with family members doing his homework. What would be a good consequence for his refusal to work? — Tasha Haslag, 23

Deborah Lipsky: First off and most importantly, there must be consistency at home and in school. Without that the student quickly learns he can manipulate people. It may come down to consequences in school for not doing work by having him lose a privilege or small reward. The key is to have the consequence as soon as the behavior (refusal to work) is seen and not delayed by detentions or more homework later on. The best bet is to have a meeting with the parents and explain that consistency is key to getting him to work at school.

What if because of the child’s inability to communicate clearly you can’t figure out the cause of the behavior? And what do you do if a child doesn’t understand the concept of consequences, and it continually makes things much worse, taking them from a tantrum to a meltdown every time? — Michelle, 34, Tucson, Arizona

Deborah Lipsky: In non-verbal kids you look to see when the behavior begins. Say for example the child has an issue with gym class, they might begin to escalate while walking to the gym. You will see behaviors just before something distresses them and they are acting out to try to communicate that.

I have not met a child who hasn’t understood consequences. Perhaps they are too complex for him and need to be simplified or the child has learned to throw a tantrum, which ended the consequence. Try different approaches such as the PEC system or social stories and work on finding out what part of consequences they don’t get. It will take hours of observation and I recommend a behavioral specialist to do an evaluation on how best to tailor a reward/consequence system for that child.

I have a 7-year-old student who hits and kicks us when he does not want to do what is asked of him. We have tried “time-out,” picture cues of appropriate and inappropriate behavior and speaking to the parents and yet the behavior continues. Any suggestions? Also, another student of mine obsesses over particular letters, numbers, and has to do everything on the schedule (will cry if he misses something). Any suggestions on dealing with obsessive-compulsive behaviors in a five-year old? — Jennifer, 40, Los Angeles, Calif.

Deborah Lipsky: Clearly time outs aren’t working and they are only reinforcing this behavior. The important thing here is to know that such behavior cannot be tolerated as it will only escalate over time. My best advice is to have a meeting with the parents and see if you can establish a protocol that works at home and in school.

Try to find a very positive reinforcer that involves an activity which you can use as a reward for good behavior and take away when he acts out. He will escalate at first over losing it but if he really wants it badly then he will quickly learn (hopefully) that he must control his outbursts. I would also suggest adding a physical exercise program where he can do something aerobic like kicking a ball, or punching a bag or pillow. Try to get him to divert his anger onto objects instead of people first and then work on eliminating the hitting through the reward/consequence program and a protocol established with the parents and done consistently every time. Remember such behavior is developed over time and can’t be eliminated overnight.

As to your second student, his schedule is his life. It sounds like that schedule is how he views his world. First off don’t put anything on it that won’t be followed or done, Secondly if he obsesses over letters and numbers, try other symbols instead or pictures, but introduce them slowly. Always remember a change to any child that goes beyond what they are used to will initially increase behaviors so be prepared.

My daughter hits herself in the head. We are medicating her and that has helped a lot. She used to hit 300-500 times per day really hard. Now it’s down to 20-40 times per day less hard. Any ideas on how to further reduce this behavior? — Luff2sail, 50, Chino, California

Deborah Lipsky: Seeing as she is medicated already and that has helped you must look at the cause of the hitting. Try to reduce the stress before she gets stressed out. If she is autistic, a lot of times stress will come from something really simple like going off scripts, going off a timetable (even by minutes in some cases), small changes or a novel situation. Try to reassure her and find some other kind of stimming she likes to do (i.e. like squeezing a plush toy, handling putty, etc.) and offer that to her during times when she has done really well so she grows accustomed to using it. Then, at the first sign of distress, offer that to her and praise her for any attempts to take it. It will take time, so don’t force her if she at first touches the putty or whatever and then resorts to hitting again. This must be done each time and be consistent and add a gentle phrase said in a calming manner.

Make sure during the hitting phase that everyone has a calm, quiet voice. It is very easy for an observer to start getting anxious and it can be heard in their voice and then the child will be able to pick up on that, further escalating her behavior.

How do I deal with a child who has always shown signs of defiance at home and in school? I can’t get help from the school or the medical profession. The school can’t control him and the mental health providers don’t have the time to meet his needs. We have done therapy through the years but it hasn’t helped. I am at my wits end and he is spiraling. Please help. — Pamela West, 45, Monson, Mass.

Deborah Lipsky: It sounds like this child has not had any behavioral interventions from specialists other than counseling which isn’t going to correct the behavior. Seeing as he has been spiraling at home, there appears to be no effective reward/consequence system that the parents have instituted and as a result of his manipulative behavior he has taken that to the school also. You didn’t mention his age, which is a factor, as puberty brings with it hormonal changes in boys that can increase aggressive behaviors including defiance. The best course of action is an ABA plan with a behavioral specialist. If he has a disability then the school is required to follow any recommendations in his IEP plan. Check with your state’s Human Services Department to see if he qualifies for any programs or aid if he has a diagnosis of either a disability or mental health issue.

When a child with high-functioning autism is attending a public school with minimally trained staff and is not compliant with completing assignments (which are within his ability), how can the behavior be modified in order to get the child to increasingly complete his assignments. — Kristina, 38, Phoenix, Ariz.

Deborah Lipsky: With minimally trained staff, any interventions really won’t be effective until they fully understand autism and have training in how to communicate with autistic individuals. Sometimes not completing assignments may not be defiance but just a lack of understanding. A question such as “can you do your homework now” is understood as “do you have the ability to do homework” and isn’t seen as a request, just a query. Try concrete statements such as “I want you to complete your homework assignment right now.”

My son is almost 10-years-old and he has autism. How do you teach your child to focus in the regular classroom? — Stephanie Shipton, 37, Muncy, Penn.

Deborah Lipsky: Asking a 10-year-old child to learn to focus in a regular classroom is like asking a fish to live on the land. There are too many complicating issues here for him and at his age he is probably unable to identify distractions or stresses in the classroom that are a result of his autistic nature. Think about sensory issues such as noises, lighting, smells and other kids all around. Think about how hard it is for us with sensory integration difficulties to look the teacher in the eye and listen at the same time to what she says intently or try to copy things off the blackboard while the teacher is also lecturing. Many of us have heightened senses which include hearing and even the whispering of other children may be heard much louder than to other people and cause a distraction. We learn differently than other people and regular classroom learning styles often collide with our ability to process information.

He needs a full observation in class by someone who specializes in autism who can pinpoint where he loses attention and why and then institute some accommodations for him. Sometimes the length of the classes are too long for us without a break. There are too many issues for me to address in this answer. Try to understand that it is very difficult for us to just “fit in” with the way of the world.

I am raising an 8-year-old granddaughter. This child doesn’t respond very well to rewards or discipline. She has been on many different medications that do not work. Her doctor says she is severely ADHD non-responsive. We have done therapy but not OT (occupational therapy). Insurance will not pay for it. Everyone is at the end of their rope with her. She has sensory issues with loud noises but they don’t do anything about it at school. Do you have any suggestions that could help? — Donna, 56

Deborah Lipsky: Your problem is very complex but let’s deal with the basic problem that seems to be causing issues and that is sensory. There is no short cut or other way than involving an OT. They are trained to deal with and come up with plans to help. If it were my child and insurance wouldn’t pay, I would find a way to self pay at least for a consultation. I have severe sensory issues. If I don’t have strategies in place to deal with them I can easily go into a meltdown or even rage. The sensory issues are the catalyst for many behavioral outbursts.