Below is a link to her video:
The Last Time We Believe This Is Going To Be Okay
I believe most parents of special needs children have a similar mindset (if they are honest) and there is a grieving period that needs to be passed though. I believe in moving through the grief and not staying in it and also find healthy ways to do it because if I deny it or stay stuck in it, I could easily find destructive alternatives to "medicate the hurt" (drugs, alcohol, shopping addictions, rage, self harm, anxiety, depression, etc..) which would do nobody any good. I mourn the child I thought I would have, bury it and then accept the child that was given to me and I try to find ways to highlight attributes of beauty and strength within Lucas and in our unique situation.
Another parent with a special needs child blogged in response to Finding Cooper's Voice's video by criticizing her approach to her son's autism citing that her reaction is a very detrimental form of "ableism" and such videos that seem to be helping is actually doing more harm than good to the disability community.
Why that response video to the “Last Time” is ableist and encourages ableism.
I get it. I see where the author of the blog, Lisa Lightner, is coming from. I had an alcoholic father who took sole custody of my two older brothers and I and he was totally incapable of taking care of us, let alone himself. I remember my aunt would come by often to cook for us, do laundry and whatever she could to help us out and although I appreciated all her efforts, she also lamented about how sad our situation was and how pitiful us children were and she worried about us and on and on, etc..etc.. What was worse was she would say these things in front of other people in our presence and we hated her for blabblering on and airing all our dirty family laundry to people and it made me feel humiliated and ashamed. I appreciated her help but I wished she would just shut her mouth. I know it came from a good place of love and concern but it was annoying and did little to help us feel better about our situation and ourselves.
In a way, I guess this is how people with disabilities see ableism. Who needs to be told how their lives are so pathetic, sad and hopeless? Yes, it is a hard life but most people have issues and people with disabilities just have a unique set of issues and different challenges than most. Their souls came to experience a unique form of being (for whatever reason), and it is important that positive attributes be highlighted instead of people focusing on the doom and gloom. Likewise, parents of special needs children also came to experience this interesting life with its unique challenges and joys. I am not sure exactly why we would chose to do so but believing that it was our soul's desire empowers me and doesn't make me feel like a victim of a circumstance. As a parent with a special kid, I know this but what the head knows, the heart still weeps. I know all this about my disabled son and I remind myself never to say and do as my aunt. I don't want to see him as a pitiable human being because he is not. I want to focus on his potentials and highlight his strengths even on those days when it may be difficult to do so. But, even though my head knows this, I still find myself crying whenever I am left alone to think about his condition. My heart always grows tender when it comes to my children.
I am eagerly anticipating the release of a book called Unshattered Faith by Diane Kim. The arc of the book juxtaposes the journey she takes with her son with autism against the 5 stages of grief as outlined by Elizabeth Kubler-Ross Click here for the 5 stages of grief. Diane Kim is an evangelical Christian who has a son with autism and in her book shares her struggles of accepting her son's diagnosis as well as grappling with the question of how a loving God she serves (she was a missionary) could do this to her family.
Here is a link to Diane Kim's book on Amazon:
Unbroken Faith: Spiritual Recovery for the Special Needs Parent
I still mourn and weep and as Diane Kim says, "grief is like a ghost that keeps coming back".
Today, while Luki was at school and Tae Tae was at daycare and as I sat alone at home with a cup of tea, I couldn't stop weeping. In the presence of people I am fine but every time I find myself alone for any period of time, be it at home alone or out in public like at a coffee shop, tears just roll down my eyes and I feel this incredible sadness. I carry my sunglasses wherever I go now. I don't know where it comes from because I thought I already came to terms with the whole disability/ autism/dup15q/epilepsy stuff. Yet, I am glad and relieved to know that I can cry and I don't have to bottle my feelings up and hide them, deny them or pretend it is wrong to mourn and weep. I am trying to be gentle with myself and allow myself to move through my feelings and I actually do end up feeling much better after a good cry. I don't think I am where Lisa Lightner is and I wonder if I ever will be but truthfully, I don't want to be where she is. It feels harsh and not very compassionate. The caregivers also have a unique and challenging journey that parallels the journey of the disabled yet it is different and separate. This is an intimate journey between the caregiver and the cared for. Our paths are intertwined and we are both entitled to our own stories without there being a conflict. Both our stories need to be heard and respected, without judgment because there really is no good and bad - it's all just there and it all just is. Is there really a right and wrong way to grieve?
Perhaps, an agreement was made in heaven between myself and Luki that we would experience this unique life together when we got here on Earth - for whatever reason.
A conversation may have taken place there which could have gone something like this:
Lucas: Let's go down to Earth and live a life where I will play the role of an intellectually disabled son and you can play the role of my mother.
Me: Sounds like an adventure! Now, let's pick a syndrome. There are so many.. How about this here called Dup15q Syndrome? It includes autism, seizures, hypotonia, speech delays. Let's throw in incontinence and maybe you can just be nonverbal for added challenge!
Lucas: Ok, that sounds interesting. This is going to be intense for both of us! Are you sure you want to experience all this?
Me: Yes, so that ______(I can't fill in the blank as I write this blog because I have no idea why we would have agreed to it, although I am hopeful that with time the answer will reveal itself and it will all have been for good) We'll experience everything this situation entails and when we get back to heaven someday, we will compare notes on what we learned about ourselves, the world and God.
And so with God's blessing, our wish was granted. And down we came.
but I digress...
After a good cry, I watched the opening ceremony of the 2018 Winter Paralympics held at Pyeongchang. I wonder why TV networks don't air the Paralympics but had such wide coverage of the 2018 Olympics? Not enough of an audience? It was an amazing opening ceremony and it lifted my spirits. Special Olympics is definitely the opposite of ableism and I wish people with disabilities can always be celebrated as they are at the paralympics. Ah well, a shift in consciousness takes time but seeing how South Korean society which viewed disabled people with disdain is now hosting the Paralympics, I know change is coming to the world.
Enjoy the opening ceremony below:
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