Each part of this series is a reminder to GIVE YOURSELF A BREAK. If you read the first part of my essay, I covered grieving. The Grieving Process is natural and healthy. That may surprise many people because, at first glance, the 5 stages of grieving that many of us are familiar with insight a negative connotation upon first glance. However, it is our response to each stage (and our resulting actions) that can either be constructive or destructive. The healthy way to ensure that we are being constructive is to be cognizant of what we are going through, not to fight against the process. One of the primary objectives of this blog is to promote family togetherness. It is my personal opinion that one of the ways autism tears families apart is that many relationships are not prepared to withstand the level trauma that an autism diagnosis is upon the parents.
As I mentioned in Part I, understanding ourselves and the others is important so that we can avoid resentment. Nothing kills relationships more than resentment.
For the remainder of the series, I want to share something you may not have heard before; each stage of grieving from a healthy perspective. I believe there is a natural purpose for each element of grief that human beings have adopted in order to prevent tragedy from destroying us and is actually there to make us stronger. I am not an expert in the topic of Grieving, rather I am simply a parent of an autistic child who gains some clarity of mind from putting my personal introspection into words. I hope that my writing might invoke thought with other people and I welcome you to share your thoughts as well.
The text books claim that the first phase of grieving as Denial, yet I find this to be misleading, especially as it relates to autism. I find it misleading for a couple reasons. The first reason is that the word denial, or the act of denying, implies that a person who is in experiencing is doing so actively. When you look a different perspective and consider the stages of grieving as a natural process, denial is more of a passive activity that I view more as a hesitance to confirm. Which may seem like semantics, but I find it important to acknowledge that having a certain amount of skepticism when we are addressed with problems and conflicts is necessary for survival. Without a healthy level of denial, every problem we encounter would be severe; we would expose ourselves to a tremendous amount of unnecessary stress by continually “creating mountains out of mole hills”. Some level of denial helps us to prioritize and distribute our energy, anxiety and efforts accordingly. Denial itself becomes unhealthy when we use it as a way to avoid our problems rather than face them.
The other reason why the word Denial is misleading is that one might assume that denial is related to the existence or validity of a particular problem. In reality, the denial process of Denial hesitance to confirm that what we are confronted with is potentially harmful. That is good because many times in our lives we are confronted with “problems” that are not as severe as we might suspect. We are better served preparing for the worst and hoping for the best case scenario.
It is important to take special precaution to remain conscious of the emotions we are experiencing and learn how to effectively communicate them with our friends and loved ones. If there is no one in your life that you feel that you can confide in, in the very least take some time to write our thoughts down for own benefit so you can organize our thoughts.
Personally, I find it helpful concentrate on isolating my emotional thoughts from my logical ones. I also find it to be helpful to introspectively consider what decisions that I make are motivated by my own needs/expectations or that of my child. None of these are more or less legitimate than the other. Logic and emotional thoughts can be equally important and many times can lead to the same conclusions and decisions. The same can be said for our desire to help our self, our loved ones and our autistic child. We cannot predict the future nor can we predict what new information we will have in the future. By thinking these through we can feel more confident that months from or years from now, that we have made the right choices based upon the knowledge that we have had at the time of the decisions. As it relates to our loved ones (especially a spouse), being clear-headed about our thoughts about how we have arrived at our choice selections we more effectively communicate them more clearly and avoid blaming ourselves or our loved ones for the decisions that may not have optimal results.
DENIAL AND AUTISM
As loved ones of a child with autism, the denial stage can be considerably more difficult to get through than with other challenges one might experiences in their life. First, there is a tremendous amount of clarification and validation one must endure as they become educated about autism and what it might mean for them and their child. One must experience a lengthy confirmation process as our children are passed from one “expert” to the next in our journey from “suspicion” to diagnosis. Each individual’s challenges and level of severity are unique and delays the answers we have. Doctors and therapists are hesitant, and rightfully so, to provide long-term prognosis, or predictions for an individual.
What is this AUTISM? What does it mean for our future? What can we do about it? For those of us with autism in our lives, we never, ever get a final answer to these questions because there is no single answer to what autism is, we never stop learning new things, the experts are still learning new things, and we will never stop wanting to do more for our children.
Here’s the topper: there is one big dilemma that we all have as someone who loves an autistic person. On one side, the more severe the diagnosis, the more services will be provided to meet our child’s needs. On the other side, we have to deal with emotional impact of having the autism label (which can mean so many different things) put upon our child by the diagnosis. This simple contradiction between our prudent actions and our feelings can make our choices about how to move forward extremely difficult. All the autism information in the world can seem like no information at all.
HOW WE DEAL WITH IT
During the first stage of grieving and while reality is just beginning to set in, it is important to understand what is happening with ourselves and other people around us. We have to remind ourselves that the diagnosis itself does not change our child, it only changes in how we and others view our child and may change our expectations. Regardless what the diagnosis or prognosis is or what may have caused the autism, they are still the same child they were yesterday and will be tomorrow. One thing that is no different an autistic person than with anyone else is that we are all work in process.
As we continue through each step, we need to understand that other people in our life, while they may be sympathetic to our grieving, will often not respond the way we might anticipate or how we would prefer.
My recommendation is to try to recognize what people do and say for what it stems from. We should resist the temptation to be hurt or angry with them when they treat us in a way that is contrary to our expectations. We are in unchartered territory in our relationships and people often do not know the best way to respond. When it comes to friends or extended family, if someone is not treating us in a way that is productive, we need to take time to decide whether or not it is a good idea to confide in this person or spend time with them until we have a better understanding of our circumstances. In tough times, I try to resist the temptation to draw any conclusions about the future of the relationship until I have allowed myself ample time to decipher the meaning of their actions or process a particular problem I am trying to work through.
The following are some responses that I have received from people that, without considering people’s intentions, might be considered as insensitive to what we are enduring:
“Oh, but she is so cute”
“Maybe it is something else”
“We love her for who she is”
“Well, we all behave like that from time to time, she’s not that different”
“Look at the bright side…”
“What do you think caused it?”
“I know all about it, my friend’s kid is autistic”
“It’s just over diagnosed”
I am not even going to assume that I know what other parents of autism really want to hear, but I want to hear is “I am sorry. That must be difficult.” or “I can only imagine how challenging that would be”. But, I have to give that person some credit, too. How do they know what I want to hear? There is no script. We have to sometimes remind ourselves that when it comes to any relationship, it is a two way street. Some onus falls upon us to be sympathetic to our friends and family from our perspective as well. It can’t be easy to know what to say when you hear someone you care about is going through a tough time.