Parent training and coaching is a vital component of successful behavioral interventions when working with children with autism, asperger’s, add/adhd and other related disorders. We know that whether it is one hour or 20 hours a week of behavioral interventions, what the child does when they are with the therapist does not matter. Sure, as a therapist we pat ourselves on the back and speak of the success of our intervention when we are able to extinguish the negative attention seeking or escape behavior we first saw with the child. However, as a therapist I’m not that interested in how well they can do with me. My primary concern is how well they can do at home, at school, on the playground and in those environments that prompted parents to seek help in the first place.
In the world of Applied Behavioral Analysis, many therapists use Koegels’ Pivotal Response Training (PRT) to help parents identify those “pivotal areas” to promote language, growth, etc. in the natural environment. I use PRT and think that it is great, but I also think it is not enough. To learn more about PRT click here.In working with parents I have come to realize that providing all the behavioral strategies for parents is usually not enough. You may be wondering what I mean by this. What I mean is, there is a cognitive-behavioral disconnect between the understanding and the doing. Allow me to explain.I have taught parents about the ABCs (Antecedent ->Behavior -> Consequence) of behavior. This is also refered to as the three-term contingency. After teaching one parent about the four functions of behavior (Attention, Tangible, Escape, Sensory), I had them teach it to their partner to make sure they understood. I believe strongly in the notion of, “to learn is to know, to teach is to understand.” However even this idea falls short of the action component.
For many parents knowledge and understanding does not always equate to action. For example, I was working with a family who had an adorable 4 year old boy with autism. He had some language and a lot of escape behaviors. This little boy had learned when mom said, “it’s time to go” or “go get your shoes” or “it’s time to clean up” that he could successfully escape these demands by approaching mom with his innocent smile and sing twinkle twinkle. After about 4 weeks of parent coaching sessions this mom was very good at explaining what she is supposed to do, but unfortunately, she was not doing it.This made me stop and ask myself, “what is preventing this parent and many of the parents I’ve been working with from turning this knowledge into action?” The answer: emotions.
Now, I am not suggesting by any means that parents need to stop having emotions. What I am suggesting is that as parents, look inwards to figure out what thoughts, feelings, emotions, etc. you are experiencing when your actions are in contrast to your understanding.There is nothing in the world that can prepare you for the complicated grief and loss of not having a “neuro-typical” developing child.
When I was 14, my father had an aneurysm is his brain stem. He had to have major brain surgery, which left him with many life altering disabilities. It was not until I was about 21 years old that I realized I had lost my father when I was 14. The father that I knew – the one I played catch with and taught me the things that make dads a child’s hero – was gone, yet he was still there. I share this with you because once I realized that I was experiencing this complicated form of grief, it allowed me to redefine, recreate and renegotiate the relationship I was going to have with my father.
My father did not ask for a brain aneurysm, my mother did not ask to become a caretaker, and neither of them pictured their lives taking this course. However, like the saying goes, life happens while you’re busy planning it. And like many of you who never planned on having a child with special needs, life doesn’t always go according to plan. Like anybody who is faced with circumstances which are entirely beyond their control, you ultimately have two options in how you respond: rejection or acceptance.
Your first option consists of being angry, depressed, bitter, absorbed in self-pity, asking, “why me.” Allow yourself to spend some time here, and even revisit it from time to time. The second option is to learn about the disability, how you can help, and how your expectations as a parent can be redefined so you are able to genuinely take joy in the accomplishments of your child.Where there is a child with special needs, there is a family with special needs. Taking care of your child also means taking care of yourself and not neglecting other relationships in the family. Take a deep breath and realize that this is not a sprint, it is a marathon. Tighten your laces, get plenty of rest, and if you’re not sure if you’re going to make it, suggest to your coach a change in the game plan.