In the fifth of this 7-part series, we discuss the sense of failure that many parents experience during difficult times with their child on the autism spectrum, and what do to about it. Lisa Dinhofer, M.A., CT, expert on grief, loss and trauma and difficult conversations shares her expertise.
Many parents experience a feeling that they are failing at parenting their child, especially when they need to hold difficult boundaries, and just don’t feel like they have enough strength to hold the line and push through the day. Lisa tells us that feelings of failure relate directly to our expectations and assumptions about our child and our parenting.
Consider what your expectations about how your child is reacting when you try to maintain a boundary? If your child is not responding how you would like, does that mean that you are a failure, or does it mean instead that your child is struggling with this boundary. Parents often get struck on the struggle. It’s exhausting. If you see that you are not maintaining the boundaries, or they diminish or evaporate because you are tired of the struggle, that indicates that you are probably not doing enough to replenish/restore and maintain your tolerance reserves for the enormous task of relating to someone with autism. There are huge emotional and physical demands in that role.
This begs the question “…have you been maintaining what you need to be effective in that role?” If the answer is no, then you need to start with that. The feeling of failure might actually be a warning sign or message reminding you that you might not be doing what you need to do to take care of yourself so you can be effective in service to your child.
“Failure” is a loaded word, and for most of us needs to be redefined. Our perspective about failure is skewed, so most of us don’t know how to fail well. When we encounter failure, we have really just encountered a method that is not working. It’s a discovery, that’s all it is. There is no need to label it failure. Now if we keep enacting that same method and keep having the same failing outcomes, then let’s remember what Einstein said “…doing something the same way and expecting a different result is the definition of insanity.” It is not a referendum on you or your parenting or you as a human being.
Boundaries are effective when they are consistent. If you are not holding them consistently, then they are not boundaries – they are just something you are doing on an inconsistent basis. That sends very confusing messaging to people around you. That is complicated for anyone to decipher, let alone those with autism. Another word for boundary is structure. Structure is a scaffolding on which children in general thrive, and it’s even more critical to children with autism. The structure is not debatable, it is something that is critical and non-negotiable. In addition to the structure you are building for someone else, the boundary has to be viewed and treated as a structure in your mind as well.
Maintaining those boundaries and that structure can be exhausting, but if we look at it in terms of absolute necessity, and not just a struggle, it might help us maintain that more consistently. If your child was screaming to run out into the street with oncoming traffic, no matter how much they were screaming or having a tantrum, you would leap on top of them to keep them from running out into traffic. It would be exhausting but you would do it and understand why you have to do it. It is necessary to their well-being. Some of the other boundaries that people in relationships with individuals with autism have to maintain are just as critical and life protecting.
When the goal is to extract a positive response to our engagement with someone, that is called emotional labor. It is emotionally intensive when you are working with someone who doesn’t provide those responses voluntarily. It can be heartbreaking to exert what looks like and feels like discipline on someone who is already struggling so much. We want to just give them a break, right? What just want to see them happy. Sometimes they just can’t comply and it can be heartbreaking when all you want is just a smile. You just want that 5 minutes of peace. 5 minutes where there is the absence of the struggle. And then you think “if I just give in this time, and don’t hold the boundary, maybe we will have the 5 minutes of peace that I so desperately want….” But that’s not going to happen. What’s going to happen is that you are helping your child run out into the traffic because you are not holding the boundary. When we hold those boundaries and endure the temporary struggle of listening to the screaming or pushback, we are helping them progress.
Discipline is not always a bad thing, it just hurts when we don’t get that emotional labor reward, yet. If we maintain the boundary and structure and do it often enough and help train their brains to create some new neuro-pathways, we will get that emotional labor reward down the road. Maintaining boundaries is about creating consistency that offers the reward from the repetitive nature of it. The reward will come.
How you define “reward” also determines how often you feel like a failure or not. It gets back to our perspective – using that perspective exercise. Asking yourself “…what went right today?” “What little victory was there?” “What worked today?” There is always something – if we can train our brain to find it. That can help with the feeling of being a failure when you think “I feel like a failure for giving in, but I just wanted 5 minutes of peace, is that so much to ask?” No, it isn’t. If you are at that limit, then it indicates that your reserves are too low and you need to bring in some reinforcements so that you don’t have the failure of inconsistency. It comes back to the fact that you need to take care of yourself to stand strong in those moments when it would be easier to give in.
Shifting your focus is very powerful. Rather than looking for the failure, start look for the victories, not just for your child, but for yourself. At the end of the day, it is your uncompromising confidence in yourself and your knowledge of your child and what your child needs, that get your through. Feelings are not facts, they are just feelings, and they will recede.
If you missed segment one, go back and listen to that because we talked about taking care of ourselves and what that means.
Lisa explains that self-care is often misunderstood as a luxury or signs of weakness. “Anemic remedies” such as bubble baths, candles or boxes of chocolates are routinely suggested, particularly to women, as methods for treating stress. The notion of a bubble bath with candles, or a box of chocolates is not meaningful self-care; it’s a marketing strategy for bubble bath. Eating a bag of Hersey kisses is filling a hole, but it is not restorative, and actually may cause more damage than help. These strategies may be great for destressing after a bad day, but when you have a special needs child, we are talking about larger, on-going issues and stressors that are conditions in which you are existing for a long period of time. That requires more meaningful self-care.
About Lisa Dinhofer: Ms. Dinhofer, MA, CT, is a certified Thanatologist and communication expert with 18+ years teaching, consulting and coaching experience for effective messaging and situational management following: traumatic death and loss, abrupt change and chronic conflict within high intensity front-line occupations and business environments. She is a seasoned educator within: healthcare, social work, mental health, law enforcement, attorneys, child welfare agencies, emergency response preparedness, forensic and mortuary, clergy, Call Centers, non-profit and corporate environments.
Ms. Dinhofer provides emergency workplace debriefings and training on work-related stress, burnout, compassion fatigue and trauma and the unique issues associated with excessive exposure to graphic material within child-crime and at-risk environments. Ms. Dinhofer also facilitates education on loss issues specific to pediatric and adult foster care. Ms. Dinhofer has been a featured presenter at over 100 scientific and professional conferences in the U.S., UK, Middle East, and the Czech Republic and has facilitated over 250 workshops. She is the owner of Koden Consulting Services and Ingeni, LLC Consulting and has been an adjunct instructor in the Graduate Thanatology program at Hood College in Frederick, MD