There is really so much that is packed into this topic – I cannot touch base on all that I would like to, I will expand on some of these thoughts in the next few posts I share … I did not understand grief until a few years ago, I was perplexed when parents said that they grieved over their child’s autism diagnosis. Out of my confusion, I went in research mode to try to understand grief and understand why these parents felt this way. Grief is predominantly defined as the loss of a loved one or you can also, feel grief with having an illness with no cure. When I understood that, I was able to see the paradigm these parents had about autism (even still today) being an incurable disease. I understood their emotions much more, however; I did not feel the same way. It’s not a disease.
I personally, gained much more understanding when I read this, “Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, spiritual, and philosophical dimensions.” Wiki
Throughout my life, I did not allow myself to grieve more accurately; I did not understand how to grieve. I do not have the same response to death and loss as others seem to have; my grieving process is different in many ways when it comes to the loss of someone or a pet(s) that I loved. I do not want to dismiss anyone’s emotions or condemn them for what they (feel) felt, however; I encourage people to read A Parent’s Guide to Responding to a Child’s Autism Diagnosis as a more positive approach. Words like “coping” and “grieving” fed into my fears. I chose to reject such social norms of negative thinking, but that came through a process. It was not instantaneous. How could I instantly be accepting of something that I did not understand? Not only that I had to filter through a lot of negative muddled perspectives in order to come to my own conclusions.
I grieved over our world and my naivety of human behaviors, though I did not know that I was mourning and grieving.
As I researched and mulled over all that I was reading, I discovered for myself that I go through a grieving process anytime I feel a sense of loss for anything. If I feel that I have lost a friend in real life this feels like death to me. Even the slightest things like losing a “like” from my fb page or giving away a book have caused my heart to feel pain and loss. I am not sure why some things feel so intensely like that, while other things have no sense of loss at all for me. I have no answers for that, but I do know that through the years I have felt much loss and severe heartache with what I now realize were expectations. These expectations were my own or what others had created. I did not feel that I was losing anything when Daniel was diagnosed – I felt that I was gaining answers. However, when I received the reactions and in some cases lack of reaction when sharing he was Autistic, I felt that somehow I was wrong for not feeling grief.
I felt that I should feel ashamed.
Even this past Monday, when I openly shared on my personal fb about the “This is Autism” flashblog, not one family member responded – I felt that sense of, you should be ashamed! When I was told that Daniel was not how “God intended him to be” and that “You should not accept labels they are limiting”, I felt that somehow my expectations were wrong. I took on their expectations and twisted them with mine. Those expectations had become part of my identity, much like when I read a book and can take on the personalities and emotions of the characters while in that world. The world I had created to escape my pains of this world had become an idealized me and an idealized life – I had written a novel in my head thinking that it was real, but did not realize I had written it from so many other people’s idealistic expectations.
That may only make sense to me. :-)
I still struggled and fought against certain expectations, but I found it difficult to feel that I was doing the right thing for Daniel when others seemed so hell-bent on expressing how he needed to be “fixed.” The “social norm” was to grieve over my son then, I was supposed to take on some sort of attitude. Either I become a “Warrior Mom,” “Special Needs Mom,” “Geek Mom,” “Autism Mom,” “Superhero Mom,” or any of the other gazillion mom titles that were out there. I am not knocking mom titles; I am knocking how society demands that we be part of a group. I am a mom who does the best that I can and I try to be better every day. (Period) I grieved not belonging to any of those groups. Interestingly, I had prided myself throughout my life for not wanting what everyone else wanted.
It was one of those love-hate types of relationships.
I wanted to fit in, but I also, enjoyed the fact that I didn’t – not sure how to explain that one. When autism became part of our life I was faced with the fact that I did have many expectations that many other parents/people had. In a strange way, I thought that once I had children it would help me become more socially “normal”. I thought that my kids would be actively involved in church. I thought that they would make lifelong friends and we would be participants in activities with other parents and their children. I thought that they would have the childhood that I always fantasized about when I was a child. I did not realize just how much I actually DID feel so “different” and longed for “normalcy” while growing up until I had my own children.
When the twins were born it was much more isolating than I had imagined.
Nineteen months later, when Joshua was born I had no contact with anyone other David and few interactions with some of his co-workers. A few times his mom, or other family members came over, but my anxieties would get the best of me causing severe panic attacks and insomnia days before or days later. I blamed myself as I did throughout my life. When we moved to where my mom lives, I thought it would be much better. We could have a church home and I had my mom. These anchors would help me be more social – I had scripts. It did not play out the way I had imagined either. We did not fit into the church group; David had many reservations about the church and the people. (He was right.)
Despite those issues, I realized that I wanted to have what other people had.
Well, I thought I did. The reality of it was that I wanted many of the same things because that is what our society said we were supposed to do. I thought that their way must be right because through my lifetime, all that I represented was wrong – it represented different, isolated, being strange, odd, left out … I expected to have a certain type of marriage, however; I could not live up to the expectations. None of those expectations were ever voiced to me by David, they were presumed by me. Those presumptions were ingrained in my head through what little knowledge I had about marriage – all I knew was that I could not get another divorce and the church made it very clear what my “duty” was as a wife. (Long story, not going there.) I expected to have a certain type of family this too was influenced by what little knowledge I had about family and the fantasies I had created in my head while I played alone as a child.
They were fantasies heavily influenced by TV, later church, and the “appearances” of other families I encountered.
My family is a flux of complexities. I wanted to have what everyone else seemed to have – happy, loving, perfect homes and lives. I allowed myself to grieve expectations that were actually nothing more than, fantasies derived from a childhood of confusion, the desire to be noticed, loved, validated, and the longing to know what it meant to be a “normal” family. I released the frustrations and the feelings that I had failed because my child was not out of diapers at a certain age, was still sucking on a bottle at the age of five, did not feed himself until he was almost four-years old and still needed me to feed him for quite some time after – I still cut up every piece of food and help him to go to the bathroom. AND that is ok; it has nothing to do with my parenting skills. It’s what he needs – every child deserves to get their needs met, and should be accepted without comparisons to any other child.
I do not share fully what our life is like or how it has been because I feel no need to do so unless it will help people.
I had to grieve my faulty ideals in order to see who I was truly as a parent and who my children were; I could not see Daniel for a short time after his diagnosis. I only saw autism, which at the time was a huge, big, and frightening unknown that I could not grasp. I could only see the negative expectations that the world was filling my head with and I was blinded to what my child truly needed. When I realized that I was fulfilling the world’s expectations in regards to my son and myself, I went down a challenging road of dismantling those expectations and ripping off blinders to see my reality and my truth. I have gone through many grieving processes throughout this journey. Our autism journey has unleashed many unexpected healing journeys for me. There is no shame in grieving, but out of grieving should come change. I grieved my lack of ability to help Daniel – I took that grief and motivated myself to learn how to help or find help.
I took my grief from my idealistic views and motivated myself to discover and distinguish our unique family.
I grieved the expectations of how people and family would support me and cultivated my own support – in the ways that I need it. I grieved the wife and mother I had imagined I was supposed to be throughout my life. I am not going to share all of the grieving I have done, but I will share lastly that most of this grieving about being a certain type of wife, mother, sister, daughter, friend, etc … was me grieving the neurotypical self I had tried so desperately to be – not because I wanted to be her, but I grieved all those days that were wasted on trying so hard and feeling like a failure … I grieved myself right into finding ME. I continue to discover these hidden expectations of social norms planted in my head – not that I actually desire these expectations, but they are hardwired from a world pounding them in my brain.
I continue to discover, grieve, and release faulty thinking becoming motivated to change daily.