I was not aware of this, but I had already started my grieving process when I first faced the possibility of having a special needs child. Here is a little bit of what I am facing:
According to Wright (2011) here are the stages a person goes through after a loss:
Shock & Denial: A person may deny the reality or gravity of their loss at some level to avoid pain. Shock provides emotional protection from being overwhelmed all at once.
You may ask why I am talking about a loss since I did not lose a child. Well, I didn’t lose a child, but I lost most of the dreams I had for him. I had to bury the life I had imagined for him to try to start to build a new one. And that’s what I was grieving, the loss of the dreams I had for my child.
Pain & Guilt: Shock wears off and is replaced with suffering of torturing pain. It’s important to experience the pain fully and not somehow hide it, avoid it or run from it. You may have guilty feelings or remorse over things you did or didn’t do. Life feels chaotic and scary during this phase.
Oh the guilt, that is a good one. Deep down I knew I had not done anything to cause it, but I had to try to understand why it had happened to my baby. I had to have done something wrong otherwise why would this have happened? I was blaming myself for it. Why did I have to have a child through IVF, maybe that is what cause it. Why did I have to be a mom after 35, maybe that’s the reason. Why did I eat that sushi (which was cooked) when I was pregnant? Why did I vaccinate him? … and so many other things that would take forever to write here.
Anger and Bargaining: Frustration leads to anger. May result in trying to negotiate with one’s self (or a higher power) to attempt to change the loss that has occurred. You may rail against fate, questioning “Why me?” You may also try to bargain in vain with the powers that be for a way out of your despair (“I will never drink again if you just bring him back”)
I was angry, very angry, especially with God. Why would He do something like that to this innocent child? Why him? I just couldn’t understand. I really hope one day I can. We may not know the answers, but He has a reason for all of this, and I need to trust Him.
Depression, Reflection, & Loneliness: A long period of sad reflection overtakes a person and the magnitude of the loss sets in. During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things and focus on memories of the past. You may sense feelings of emptiness or despair.
I think I am still in this stage. It comes and goes even though I already reached the acceptance stage long ago. I think being away from my family doesn’t help much to pass this stage. Thankfully I do have wonderful people around me that help me get through it every time I see myself getting into this phase again. I am not going to name everyone because I am afraid I will forget someone.
The Upward Turn: Life becomes calmer, more organized as one starts to adjust to life with the loss that occurred. Your physical symptoms lessen, and your “depression” begins to lift slightly.
Once we got the evaluation done and figure out what needed to be done the burden I felt got a little lighter, I wasn’t as angry anymore.
Reconstruction & Working Through: As a person starts to become more functional, realistic solutions seem possible for life after the loss. You will start to work on reconstructing yourself and your life without the old reality.
I guess here would be when we start to make new dreams, and start to build the future with our new reality.
Acceptance & Hope: The last stage – a person learns to accept and deal with the reality of their situation. A person is more future-oriented and learns to cope. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.
Acceptance came early on, there is nothing we can do to change what life has brought us, so we have to accept it and from that day on we just have to learn how to deal with it. We are still learning, and we always will. Nothing is black and white with austism, so from now on we will take one day at a time and cherish every single improvement. As for the future…. we will build it as it comes, right now we will focus on the present!
“I do not want to foresee the future. I am concerned with taking care of the present. God has given me no control over the moment following.” Mahatma Gandhi
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