Written by Tania Duarte, M.S. BCBA

Putting Yourself in The Parent’s Shoes

Receiving a diagnosis that your young child has a disability can cause an enormous amount of fear, stress, anxiety, and grief for your family. Your aspirations, dreams, and hopes may now seem impossible to imagine. You eagerly and desperately research everything you can find out about their diagnosis and possible therapies. However, you are hit with constant conflicting advice and unfortunately a lot of incorrect information. The whole experience can be pretty confusing and isolating. How can we as ABA practitioners best serve our clients and their families? By providing compassionate and thoughtful care.

Listen To Caregiver Concerns

When working with a client and their family it is important to provide them with the best quality services possible and this includes listening to the needs of the family. Through ABA intervention we can help decrease clients’ maladaptive behaviors and increase their skill set. As a result, we can improve the quality of life for both our clients and their families. So, when designing programs and interventions it is important to take the families into consideration. What interventions would be socially acceptable to them? What are the parents’ primary concerns? What are goals that are important to them?  Take into account those goals and set up some baseline or ABC data collection to determine the validity of working on those. Working on goals important to the family can and will help with buy-in.

Empathetic and Compassionate Care

Being empathetic and compassionate with your words and actions is critical. Blaming caregivers for their child’s behavior unfortunately is something that occurs too often in the ABA community. However, you should ask yourself why your plan was not successful? Because the fact is if your plan was not followed correctly, it seems you didn’t gain the parent’s buy-in or the plan wasn’t socially valid. Were you focusing on any goals that the parent had an interest in? Did you consider their resources to implement the intervention appropriately? Did you adequately and appropriately train them on your plan? Did you show them how to appropriately perform the intervention from start to finish? How often did you check they were implementing it correctly? Did you provide feedback?

A Whole New World

When families first start Applied Behavior Analysis (ABA) therapeutic services for their child it can be quite a learning curve. Their learning history and habits in their repertoire regarding child-rearing can potentially “get in the way” of their ability to respond to situations according to our basic principles of behavior analysis. For instance, in the past, if their child screamed, they may think to tell them to stop screaming and without thinking they’ll be providing that behavior with loads of attention and positive reinforcement. Unfortunately, these strong learning histories can be detrimental to our clients’ success. How can we help caregivers develop this new way of responding and acquire the somewhat foreign skill set required in ABA? Through proper parent training.

Providing Adequate Parent Training

In addition to ensuring the intervention you implement is socially valid, it is important to make sure to have the family involved in the application of the intervention. The goal is for them to be able to be successful in implementing the intervention even when you’re not present. In the beginning, it may be best to have the family observe you while you demonstrate how to run the intervention. Then once you see success with your program, coach the family through the steps and provide feedback. There is no use in teaching parents an intervention that you are not having success with yourself, in fact, it is likely to be definitely going to be a total disaster. Just like you take data on your clients’ progress, you should take data on your parents’ progress too. If you do not see improvement, what can you change? Should you try a different feedback strategy? Maybe written feedback paired with verbal or Behavior Skills Training (BST) when teaching skills. With BST you give the instruction, demonstrate the skill, have the parent perform the intervention, and then provide feedback on their performance. You may even choose to practice with the parent without the client present beforehand if you feel that would be beneficial. So you provided training and feedback to the parent, they should be good to go right? No. Although you are likely to see improvement, it takes time just like with anything. Make sure to be motivational and reinforce the caregiver’s success and be supportive even if they are not successful. Remember, this is a challenging process and for many people, it doesn’t come naturally. Tactfully address your concerns when you see them and redirect. For example, you can say “how about we try this” or “I have noticed when we do this instead…”.

Review Data with The Parent

Sometimes it can be hard for parents to visualize their child’s improvement because they may feel there is so much that their child is still behind with and can’t do.  What are some ways we can keep parents informed and help them see their child’s progress? It is a good idea to take some time out to review the data with your clients’ parents and show them how they have progressed. Make sure to take the time to show parents their child’s graphs and explain them in layman’s terms to them. You will want to explain to them what skill or behavior the graph is on, what all the phase labels indicate, any prompt codes, what is represented in the x-axis, and what the y-axis represents. Another neat way to compare progress is to take a video before intervention and after for the parents to see. This helps caregivers visualize the progress better and see just how much their child has improved throughout their time in therapy.

My Personal Experience

What is it like for the family? Well, every experience is unique when it comes to having a family member with a disability. For instance, my sister has severe autism and needs extra support with daily tasks. Day-to-day activities can be challenging for me and my family due to my sister’s needs. I worry a lot about her happiness, future, and safety. The best way for me to describe how it impacts me and many other families is that it is similar to the experience of employee burnout in our field, but imagine experiencing that around the clock. Even though we still encounter many challenging times with my sister, I am very thankful to Applied Behavior Analysis because I know the challenges we would be facing now would be so much greater if it wasn’t for the early intervention she received. Thanks to our science my sister can communicate many of her wants and needs. Without that skill, I can’t imagine how much harder things would be for her and my family.

Additional Help for Families

In addition to ABA services, there are other ways to help improve the lives of families. Self-care and respite are critical. Additionally, counseling is another valuable tool that families can benefit from. It helps to have an outlet to express thoughts, feelings, and worries. We recommend researching resources available in your area and making sure your clients are informed of all potential resources available to them. Below we have also outlined some self-care tips and activities for caregivers.

Self-Care Tips & Activities

  • Make time for date nights
  • Go out with friends
  • Plan a vacation or staycation
  • Consider counseling
  • Engage in exercise
  • Listening to a podcast
  • Have a spa day
  • Bake your favorite dessert
  • Write in a journal
  • Read a book
  • Watching your favorite show
  • Go to the movies

Conclusion

As a field, we can have a positive impact on the individuals’ lives we work with and their families. It is important to consider what the families are going through and try to put yourself in their shoes.

How Therapy Brands Can Help

Due to the high demand for services, practitioners can have an overwhelming workload where it can be challenging to find the time to provide the highest quality service and best outcomes for their clients and their families. Data collection tools like Catalyst can assist practitioners with their time-saving features such as automatic graphing of data, curriculum libraries, auto mastery, and progress note generation. Using automated data collection tools over manual data entry allows clinicians more time to conduct parent training, observe their clients, make treatment decisions, and train RBTs. Go paperless with Catalyst and save yourself time for what really matters, your clients and their families.

References

Hogan, A., Knez, N., & Kahng, S. (2015). Evaluating the use of behavioral skills training to improve school staffs’ implementation of behavior intervention plans. Journal of Behavioral Education, 24(2), 242-254.

Sivaraman, M., & Fahmie, T. A. (2020). Evaluating the Efficacy and Social Validity of a Culturally Adapted Training Program for Parents and Service Providers in India. Behavior Analysis in Practice, 13(4), 849-861.