Newsletter
Volume 31 | 2008 | Number 3
Because Our Kids Are Worth It: A Parent’s Perspective on Behavioral Interventions at Home and at School
By Dr. MaryBeth Walsh, Caldwell College
It is our job as parents to assure that our children learn how to be as independent as possible, as productive as possible, and to be well integrated into our families and communities. This is the job of all parents for all children – but for us parents of individuals with autism, we need to be much more attentive to the details and much more involved in the process. This is why I think of raising a child with autism as “Extreme Parenting.”
All parents wean their babies off formula or breast milk and introduce solid foods, but most don’t need a behavior analyst and a databased program to teach chewing and swallowing of chicken nuggets, like we did. All parents help their children learn to talk, but most don’t have to explicitly and separately teach their child how to make the “m” sound and how to make the “ah” sound before they hear child say for the first time – “mama.” Many parents worry about the quality of their children’ education, but few need to start new schools just to provide a place where their child will actually learn. All parents know it’s best to remain consistent with their children, but few pay for the occasional lapse like we do. Parenting your child with autism is simply an extreme version of parenting. All parents know that what they do has a huge impact on their children’s lives, but few have the potential to have the impact that we do. We parents of children with autism have the opportunity, the obligation, and the responsibility to go to extremes to assure that our children learn as much as they are able to learn.
There are three key strategies to make sure that our children learn. The first is taking direct and frequent measurement of our children’s progress in learning. The second is forging respectful and productive partnerships with professionals. And the third is being actively involved in our children’s learning and making sure that the bar is always set high.
Observing your child’s progress in learning situations, and measuring that progress is the first important strategy we parents must employ to assure our children learn all they are capable of learning.
If you’re going to most effectively help your child with autism you must begin with your own education. The more we know about effectively helping our children acquire the skills whose very lack defines autism, the better it will be for our children in the long run. Learning the basics, and maybe for some of us, over time, the finer points of the science of applied behavior analysis, sets us parents up to be able to measure our children’s progress. It helps us attend to their learning and watch for skill acquisition by collecting data.
It’s also critical, if at all possible, to work directly with a qualified clinician who can give you immediate constructive feedback on how you interact with your child. It is critical to know how to effectively reinforce behaviors we want our children to acquire, and how to not reinforce behaviors that are dangerous or destructive. Knowing how to work effectively with your child empowers parents to expect more, to collect the direct and frequent measurement of our children’s learning that documents their success or that allows for program correction if no progress is documented.
Data collection is not brain surgery or rocket science, and it is not just for professionals. Collecting data is the best way to make sure our children’s time is not wasted. It’s the best way to keep watch over your child’s learning.
Typical kids learn to talk and run and chew and play with little or no effort, by them or us. Autism is different. Observing and measuring your child’s progress is an essential part of their education. You must know if the little skills are being acquired, and if they are being used as building blocks in greater skills. Intuition isn’t enough here.
Many professional organizations welcome parents as partners in advocacy for effective learning for individuals with autism, and many of these organizations will steer you in the right direction regarding the scientific validity of any proposed intervention or instructional method for our kids.
I know that all parents are not comfortable embracing science as the criterion of autism interventions, and so I’d like to propose a minimum standard to guide us: we parents should all take the pledge that medical professionals take – and promise to do no harm. The common parental obligation to protect our children from harm is not diminished by their diagnosis of autism, indeed it is made more binding on us.
Why do we measure our children’s skill acquisition? BECAUSE WE BELIEVE THEY CAN LEARN. We believe our children are capable of learning, no matter how significant their autism. They are capable of acquiring skills. They are capable of progress.
This might sound obvious, but is really a revolutionary insight. Until behavior analysts began to work with our children, and document scientifically that their teaching led to our children’s learning – no one really thought our kids could learn. Autism was seen as hopeless, and improvement unlikely. We parents owe the behavior analytic community for proving that our kids with autism are capable of learning.
But mostly, we owe our kids. We owe our kids faith in their ability – not faith based in wishes and hope, but faith based in the scientific demonstrations of the ability of individuals with autism that behavior analysts have documented time and time again in the past 40 years. If we believe what the research demonstrates, if we believe that our kids can learn – then we will measure their progress, then we will have recourse to direct and frequent measurement of their behaviors to show that they are capable and can learn and are learning. I have confidence in my child not just because I love him, but also because I know the research.
Establishing and maintaining fruitful parent professional partnerships is a critical task for ensuring that our children reach their full potential. This seems obvious when stated aloud, but when this sort of partnership occurs under the direction of an agency or school system, things can be very complicated.
There is a guiding principle which can help you navigate the various bureaucracies and individuals: stay focused on doing whatever’s in the best interest of your child, and forging strong working relationships with others who are also committed to your child’s best interest.
Forming functional parent professional partnerships may be complicated by the structure of the school system, your local administrative law, state interpretations of IDEA and NCLB, third party service providers, early intervention services, privately hired and trained therapists, and the myriad others we encounter. You as a parent can still seek out people who, like you, seem to have your child’s best interest at heart. Work with them. Keep your child’s best interest in sight as the goal, and ignore things that are peripheral. Fight when you have to, but be prepared to put the work into building up relationships again after the fight. It’s not easy – but no one ever said being a parent would be easy. Hey – even for parents of kids who don’t have autism, it’s not always easy.
This third strategy follows from the other two. Parents have to be involved in order to take direct and frequent measurement. Parents have to be involved in order to forge productive relationships with the professional dedicated to our kids. And parents have to be involved in order to set the bar high for our kids.
Parental involvement with our kids’ learning is critical because, in the first place, we have the power to reinforce or undermine just about everything our children learn from professionals and in more structured learning situations.
Parental involvement and expectations setting is critical for our children’s future. We will still be there with our kids when the school services end at age 21. We parents must prepare our children with autism for life after school. We parents must always be thinking about the future.
Dr. Linda Meyer, Executive Director of The Center for Outreach Services to the Autism Community in New Jersey, better known as COSAC, has taught me this critical insight: teach to the next environment. So, if your child with autism is young, and may soon be included in a general education classroom, your job is to make sure he/she is prepared for that classroom. If your child with autism is older, and will remain in a separate classroom or school until graduation, then your job is to make sure that the child learns the skills needed to success in the NEXT environment. If your child with autism is not going to college, then it may not make sense to spend all of their high school years refining their academic skills. What’s their next environment? Will they be employed? Then teach them the job skills needed to succeed. Will they need to know how to punch a time clock? How to sign their paychecks? How to deposit them? How to load or empty a dishwasher in your house or their group home? Then teach it now. You can’t rely on school to do this– in many places vocational training has virtually disappeared; everyone is preparing for college and the new information economy. But that won’t be my son at age 21, and that won’t be what we prepare him for. We need to prepare him for life, for a job, for taking care of himself, his clothes and his food, and we need to be working on those things now – when he’s nine, and not wait until he’s 14 or 18. It’s hard to see the future for our kids, but as soon as you catch a glimpse of it – then work on preparing your child to succeed in that environment.
Dignity is the birthright of every human being. No matter how impaired, how involved, how severe, how – and I dislike this expression, - how “low functioning” an individual is, every individual still deserves to be treated with dignity, and to have a sense of her or his own dignity. But this can prove elusive for some of our loved ones. For those we love who cannot communicate their needs yet, or use a bathroom independently yet, or dress themselves, or cross a street, or sit in a restaurant, dignity can seem far removed. For those who only ever receive help or support from others, and never have a chance to do things on their own, or to give back to others, dignity can seem out of grasp. We parents can, and must, do something about this. Our loved one with autism can learn – they can become more independent than most ever thought, they are competent. It is up to us parents to make sure they are taught well. It is up to us parents to make sure they are taught functional skills. We parents know they have dignity. And it is up to all of us, parents and professionals together, to make sure that they learn the skills that will allow strangers to immediately recognize that dignity. Even when we are not there. Especially when we are not there. We know our kids can learn. It is our responsibility to make sure our kids can let others know this on their own. It is our job to teach our children to become their own best advocates.