© David Sponder, L.E.P., BCBA, RDI CC, Floortime C1
Executive Director, Sponderworks Children’s Services

Good therapy, a good intervention or a good program must start with a “big picture view.”  For us, there is one particular question that helps us see that bigger picture…

Is what we’re doing going to make the biggest difference we can in this person’s and in their family’s quality of life?

There seem to be some “obvious” answers to that, but upon closer examination, there may be even better ones.  But before we get into a discussion of what those might be, we can probably all agree that what would make for a better quality of life for one person may not mean the same thing for another.  This is always a very individualized decision.

We came up with the idea of Citizenship to describe and define Quality of Life (QoL).   This is because we generally think of citizenship involving both rights and responsibilities.  More broadly, we think of ourselves as citizens of our country, but also of our communities – and we can belong to many different “communities” at the same time.  Each of these communities grants us rights and expects us to be responsible in specific ways.   We’ve used the metaphor of Citizenship to define it on several levels that are useful starting points for developing a program focused on QoL:

  • Personal Citizenship: This has to do with the rights and responsibilities of one’s own body; one’s personal rights to dignity and freedom, as well as one’s responsibility to keep one’s self clean and healthy.
    • Does the person care enough about himself to keep clean and make healthy choices?
    • Can the person tolerate a normal home environment, or do sensory or other difficulties interfere with that?
    • Can the person be happy spending time alone?  Does he know how to occupy his time?  Does he spend his time productively?  Does he spend his time alone by choice, or because he does not know how to have friends or how to behave in ways that are attractive or at least tolerable to others?
  • Citizenship in Personal Relationships: A primary measure of successful citizenship in a relationship is the impact on the QoL of those that love and care for us or that wish to be our friends.  For instance, we can teach a person a lot of communication skills, but if the person uses communication only to ask for things, then they miss out on the major reason the rest of us communicate and that is – to share our experience with others.Se we ask, “What if teaching certain emotional skills made a person more desirable to be around?”  Perhaps that would open up untold opportunities to learn communication from lots of people and lots of places.  On the other hand, what if a person is so difficult to be around that only highly trained professionals and committed parents [that feel they have no other choice and that may be at the end of their emotional rope] can tolerate being around her?  And when they are, how much of that time is spent fighting with the person and how much is that person really available for learning?  How much time and money is wasted on overcoming the person’s emotional obstacles?
  • Citizenship of the Family: Many families tell us that they no longer take their son or daughter shopping or to restaurants, or that they cannot get anything done while their child is awake.  Many tell us that their child does not want to be part of the family in the same way that their other children are – that they don’t want to be with them simply to enjoy their company.  The child only wants to be around when the family does something he’s interested in.Everyone has to watch their television show.  The child’s inflexibility defines the family.Sometimes it’s even worse.  The imp-acted person is violent, aggressive, argumentative and constantly engages family members in power struggles.  Perhaps the greatest source of parental stress is when parents feel that they cannot meet the needs or even protect their other children.So we ask, “Is your impacted family member the only one or even the main one affected by the disability?  Do they demand disproportionate amounts of your time and attention because of their needs?  Is it taking time and emotional energy away from your marriage or from your other children or your jobs?”  If so, have we picked the skills to teach that would make the most difference here?
  • Citizenship at School or Work: What if a person is very smart, is very talented and has a lot of academic or vocational skills, but his or her behavior or lack of emotional skills prevents them from success?  A good citizen at school or work, just as in a family or personal relationship, cares about, or at least can be compatible with the needs of others.

The Real Source of Behavior Problems

Simply put, behavior problems are the result of a mismatch between the developmental capacities and skill sets a person has, and what the environment demands.

Here are a few examples:

The doctor’s office requires you to wait, but you don’t know how to fill your time while waiting, and you then act up to force whoever took you there to leave.  (The same thing could apply to when you talk on the phone; when you go to a restaurant and your child has finished eating and wants to leave before everyone else; when your child wants to leave the theater as soon as the popcorn runs out; when your child wants to stop working because he’s lost interest, etc.)

The environment requires you to stop what you’re doing in order to go do something else (transition).  But you don’t have the ability to think about anything else but what’s in your attention at the moment.   And it seems that only your own ideas and actions can occupy your attention.  You don’t notice that everyone else is cleaning up or hurrying up.  You don’t appreciate how inconvenient it would be and how galling it is to ask me to run to the store at 11 pm to get you a new battery for your game.  You also didn’t notice that I was feeding the baby when you went into a tantrum about it.

There’s a lot of mention that transitions from preferred activities to non-preferred activities are a problem – but that’s not always the case.  The problem is that when your you get an idea or involve yourself in an action, you literally cannot give serious consideration or prepare yourself for the next activity, no matter how attractive it might be.  You respond with a “reflexive/automatic No,” as if you can’t or won’t even think about it.  Sometimes, after some sort of a waiting period, you come back, after processing the information and you have a different response.

And you also don’t know how to finish things to your satisfaction in the amount of time [the environment] allotted.  The environment requires that you get ready by a certain time.  You don’t really understand clock-time or duration.  You don’t understand the consequences to you or to your parents or brothers or sisters if you make them late.  The environment (the people in it) keeps referring to “minutes,” “hurry,” “late,” “before,” “after” and other words that you don’t yet have concepts for.  The only reference point you ever have is your own ideas and actions, and anything that interrupts that causes you to withdraw or get angry, or do nothing different at all.

The environment requires that you stay on task, despite distractions.  But you have trouble forming or sticking to your intentions or goals.  You know you’re supposed to get dressed, but there’s Buzz Lightyear.  You have no doubt what the right thing is to do – it’s to play with Buzz.  Why is playing with Buzz the right thing to do?  Because the decision comes from your way of thinking and your worldview that things start when you get interested and they’re done when you lose interest.  Putting on your socks lost interest as soon as Buzz came into view.

The environment requires people to be able to adapt to them.  This is why we don’t send 18 month old children to the first grade. This is why I don’t go dancing.  Developmental capacity matters, and when it’s not there, we get get escape motivated behaviors, withdrawal, or defenses.  These are often problematic, especially when the forms are chronic or acute, make one unavailable for learning, missing opportunities and arresting development.

But chronological age refuses to be irrelevant.  Developmental capacities make a difference.  Your child may be 12 years old and old enough to be in middle school.  but he handles his emotions like a 2 year old.  He still has tantrums and can be inflexible and egocentric like a 2 year old.  He can be as impulsive and distraction prone as any two year old.  But he is in 7th grade now and the environmental expectations are – well, middle school.

The Quality of Life Approach to Behavior Problems

The list of discrepancies between what the environment expects and what an impacted person can bring to bear in terms of abilities can be lengthy.  The list may be so long that it would be impossible to teach them one by one – especially if neurotypicals are whizzing along at vastly greater speeds.

Quality of Life Programming might address the following first:

  • How can we help you learn to like and trust people so that you are always open to being around them and therefore always willing and able to learn from them.
  • How can we help you learn to be flexible enough and wanting to please others so they want to be around you and teach you?
  • How can we help you learn to learn by being so interested in others that you pay attention to what they do?
  • How can we help you learn to learn by being interested in relevant things in your environment?
  • How can we help you discover patterns around that let you know what to expect and what you should do?
  • How can we increase your sense of safety and trust by learning the above, so that you know longer respond to challenges by withdrawing, escaping or trying to take over?

From there, Quality of Life Programming can then move to refinement skills:

  • Now that you want to be around me, how can we improve our communication and connection with each other?  How can I help you learn to communicate better and better and care mkore and more about people?
  • Now that you trust me and your flexible, what might be the best things to expose you to and in which way should I teach you?
  • Now that you notice others, how can I help you understand what’s going on?  How do I help you do that for yourself?
  • How can ?I help you stay in there and respond to challenges not by withdrawing or coercing others, but by keeping trying?

Now, Quality of Life Programming can look towards specific, but pivotal skills.  These are skills that once acquired, lead to further learning that is not part of any formal lesson plan and that can occur at any time, with anyone, anywhere.  These might include:

  • Handling uncertainty by trying things.  We don’t know exactly what you will try, but we will support and help ensure your success for anything appropriate that you try.  We look not toward teaching you one answer for every problem.  We want to teach you that there are many different ways to solve problems.  We may not be able to do that directly, you have to discover that for yourself.  If we gave you the answers, they won’t always work.  It is better that you just keep trying, and our role is to support your trying give you just enough help so that you feel better about yourself for trying and you want to do it again.  We are fond of saying that “Mastery is the Reinforcer.”
    • We also know that by encouraging you to try multiple strategies with supporting adults around to guide your efforts and teach specific skills and strategies in the process, that all areas of your development will accelerate.
    • We know that doing so can risk failure, and we want to teach you how to use failure rather than succumb to it.
  • Becoming so interested in your surroundings that you are beginning to get more and more, if not most of what you know by eavesdropping and watching.  You no longer depend on professionals to bring lessons to you on a silver platter and then be disappointed when you can’t seem to apply your lessons anywhere else
  • You get so experienced with that that you develop even better ways to find what is important to pay attention to and what is not.
  • You begin to watch other people in ways that help you understand their feelings and inner thoughts.  You develop the capacity for empathy and intimacy.

 How Do We Do It?

We don’t come at you with “try this and try that” approaches.

We focus on helping you understand how this unique path of development influences your child’s worldview, and that information helps relieve your stress, firm your resolve, and allows you to feel that you can know what the right thing to do is.

We do not respond to reality.  We respond to our perceptions of reality.

Using principles of behavior, child development, information processing, systems theory, biology, ethology, and evolutionary, developmental and neurological psychology to help you understand how your child experiences the world. She’s responding to her reality, and the more you understand that, the more effective you will be.

At the same time, we help you examine your view of your child’s behavior and your understanding of your motivations.

For instance, brain chemical changes that occur when you love a child can cause mothers (oxytocin) to become much more distressed at the sound of their child’s distress than before motherhood.  This makes them more vulnerable to feeling desperate when their child won’t eat nutritious foods or restricts himself to a list of four or five foods.  It is hard for mothers to describe how it feels when their child won’t take nutrition from them, and how that all changed when they became mothers.

Logic says, let him miss a meal and he’ll be hungrier for the next meal and eat anything you give him.  That works on paper (and in all of the feeding studies where this info and theory comes from), but real mothers are prone to manipulation from their child for fear the child won’t eat.

This is an evolutionary adaptation.  For 99% of our human history, we were nomadic hunter gatherers.  We were always entering new valleys and spaces with new plants.  Plants can be toxic.  We didn’t know what could or should be eaten.  The child that ate everything didn’t pass his genes on to the next generation.  The parent that could remain nonchalant when their child didn’t eat didn’t have grandchildren.

That left us.  We’re the survivors because that is now how we are.  Picky eating is very common (60% of boys), and mothers that are stressed  out and making accommodations that make them uncomfortable (“I know better!”)  are also very common.

This is a tough situation, but knowledge is power.  Parents can stop fighting about it.  We rely on the fact that childrens’ genes tell them to be picky, but they will eat familiar things.  Mothers can be reassured when encourage to take another look at how proportionate and robust and energetic their child still is.  They can now put this into perspective and make informed decisions.

Think of how different this is than trying to come up with the right” incentives” to eat: pleading, negotiating, bribing, threatening, punishing, ….  all of that has been tried.  Hiding peas in the macaroni may have gotten you busted and eroded trust between you.  So all the tricks and the strategies didn’t work.

Knowledge will lead to something better – something now more sensible to you that you’ll feel comfortable with and be more consistent when you try to follow through.

We can do this because there are thousands of studies of how children think and how atypical development affects thinking that we can call upon.  That’s our job.  We digest that for you.

We then strip all the jargon away and “run things past you” based on hypotheses we develop together.  We bring insight gleaned from working with hundreds of children and families and taking a serious and unbiased look at what information is out there and we use Applied Behavior analysis to see how experiences and your child’s unique developmental characteristics shaped the behaviors and skills sets/deficits we see at the moment.

You bring us the Number One expertise on your child.  That is your role on the team.  You are the expert on your child.  You’ve been there since Day 1 and you know what he’s learned and been through.  You know what makes sense to you and what does not.  As you see throughout this site, we’ve taken extra effort to learn more than one way to do things, while maintaining ethical high quality.  So you can actually tell us that a method or strategy doesn’t make sense to you or doesn’t fit your family, and we won’t insist that you do it our [only] way.