The Ebb and Flow of Grief

Photo: Oneras

It's that time again. I've found myself at the proverbial seashore of DisAbility life. I once read that this journey is a lot like being at the beach.  Sometimes the tide is out. AND YOU PLAY! And then other times, the TIDE IS IN and you FEEL LIKE YOU ARE DROWNING. I'm not exactly drowning right now and I came here to write about it and then realized I'd not really introduced the topic of Grieving in this context so, I'll start with Leisa's 101 DisAbility Grieving Primar and then, in another post, another week, I'll get to thrashing about my current stage.

Grief for me came and comes in stages.  The first years of an "early" diagnosis or after the diagnosis, whenever it occurs, are the most emotionally brutal. Overall, I grieve quickly. I run a race to get it all done. (All the "it"s meaning when the heavens open up and rain must-be-done paperwork down on you. Not unlike when one gets married OR divorced.) After I've exhausted myself in the initial stages of any grief process, I often realize that many of my peers are still at the start line grieving. And then I grieve. The important thing is that I grieve. And after racing from the start line and then collapsing after those first couple of years of early intervention, it got a hell of a lot easier. Or, should that be a heaven of a lot easier? Maybe, like purgatory of a lot? Those first couple of years delivered me a case of three-month walking pneumonia. A little wake-up call that taking care of ME must be priority.

Anyways, the next time I can remember a Grieving Passage was when I realized that my daughter was probably not college material. She was about five. Although that might be a little early to make such an assessment, I was getting it how she was processing knowledge in school, not at the speed of or at many of her other peers with autism. The beautiful AHA! that came from that passage was that a college degree was not a validation of a person's worth. I had gone from believing my child would be cured, to that she's become the next Temple Grandin sporting a Ph.D., to that she'd go to a community college, and then ending at my acceptance that we were not college bound. And. That. Was Okay.

The next passage I recall was a two-year stint where I processed that she most likely has Intellectual Disabilities in addition to her autism and severe language disorder. As I'll write in a future post, this is the dreaded dx (diagnosis) of so many autism parents. But then, my epiphany became: Of, course! Life just gifted me with an extra heaping of challenge because She knew I'd be able to produce some mighty fine lemonade. And, look, I've got a daughter who's received international acclaim for her art. And that...is her genius.  This stage took place around ages nine through eleven.

And now, I realize I've been tentatively parking in a passage called puberty for the last couple of years. And like the tide, my awareness, my lack of acceptance, my sense of peace with it, ebbs and flows. More on the latter to come.

Comments

[Leisa Hammett]

Thank you again, Brenda!

[Brenda]

Thank you for the long and thoughtful response! I look forward to your book and more of your blog. And thanks for clearing the path and pioneering the frontier for all of us!

[Leisa A. Hammett]

Oh, Brenda, thank you so much. I'm so silly busy with this blog and the book I'm writing (autism-related & due out Nov., www.rebekahpope.com/heartachetohope)and all the rest, of which you know about, that I've neglected (not cool) Autisible, which was so kind to syndicate my blog. Thank you for sharing!!

Fortunately, I don't personally feel left out. I remember when it was my time during the sunshine of early intervention. Ya gotta take it all in stride and with peace, love and compassion in ur heart knowing that it's a process of evolution that in the long run helps us all. Also, I have many great friends who've "grown up" with me and whose little kids are now big ones. We are probably the most united autism front yet in terms of our numbers moving, as a cluster in age and time -- meaning not just my group of friends but all those who were diagnosed mid 90s -- on toward adulthood. We helped change the lower front, now we're pushing for change on the adult end. And then it will be better for your end when you arrive. And so the cycle goes -- meaning that I have benefitted from those who have gone before me as well.

Stay tuned, I'm ramping up my autism/disAbility coverage now (still posting about art and all the rest of life, too, that we've entered our current phase and Monday's post is going to be a TALK BACK! Thank you, again!

[Brenda]

Leisa,
I just discovered your blog through twitter and Autisable. Fabulous! I know moms of teenagers with autism who feel a weensy bit left out b/c so many of us moms have little kids with autism. They will love having you as a resource. My son is 5, diagnosed at 3 1/2, so we are on the beginning side. But I have struggled with grief and acceptance in these early stages. Love your blog! Will visit and forward along.