Friday, December 25, 2009

Not My Proudest Moment

EDITOR'S NOTE: This post originally appeared on Genetically Enhanced on August 20, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

* * * * *

Let me first set the stage for this incident...

  • It was Sheridan's first birthday.
  • Also, on that day, I found out that Sheridan's early start services will (potentially) no longer be covered by the State of California due to a change in the Lanterman Act that now requires ALL persons receiving assistance related to a disability to first use up whatever your insurance will pay for. And I found out that even if those services are not the same quality, or have a longer wait list, etc. etc. we still cannot get the services he is entitled to - needs! - with the same therapists who have expertise in birth to three (I'm oversimplifying here, and every person's experience will be different depending on their insurance coverage).
  • So I found out that I will have to fight both our early start regional center AND the insurance company at the same time to ensure Sheridan retains his services (doesn't everybody know fighting a war on two fronts is disasterous?).
  • AND I found out that the speech therapist who told me Sheridan was ready for weekly ST did not request that in her report. Because "he's so young, we've never requested it for anybody his age before, he'd be the first." So, they are letting his chronological age determine his services rather than his developmental readiness? So, I had a rather, um, assertive conversation with her.
  • And the shot in my rear end the doctor gave me to help with my severe back pain was wearing off as I was caring my 19 pound son on my hip.
So, with all that in one day, I'm at a local store and...

A man likely in his mid-twenties was behind me in the checkout line. He commented on how striking Sheridan looked.


He's really cute. And there's something really different about his look. He looks exotic.

Oh, thank you!
His eyes are really interesting. His features are really neat. Is he exotic?

[Okay, not sure exactly what he meant by all this exotic talk, but whatever.]
Well, he has Down syndrome and maybe you're noticing some of his unique features?

Oh, wow. So is he retarded or what? You know, how they are all retards?

No more f***ing retarded than you.



I told you it was not my proudest moment.

No matter how exhausted, no matter how frustrated, no matter how difficult being an advocate is at any given moment... it's the life we all live, breathe, sleep, eat, and LOVE.

And I feel like I let Sheridan down. I feel like I let people with special needs down. I know I let myself down... I really struggle sometimes with giving myself permission to not fight every fight.

But I feel it is my duty, my right, my heart's desire, my son's need that I fight. So I'm really regretting that I let my gaurd down and got so defensive on this one. This man's comments came from a place of ignorance, and I have the ability to at least try to fix that.

I still don't know exactly why I had the response that I did (although I do have a sarcastic streak). Maybe I was being the quintessential Mama Bear protecting her cub. Maybe I was just angry that somebody called my son a retard on his first birthday. To his face. Maybe I felt ganged up on after all the other stuff that day. But we all face "stuff" everyday, and will face plenty more and bigger "stuff" in the future.

I just feel the need to apologize. So, I'm sorry for letting my community down. And I'm sorry for letting Sheridan down.

I know I have a lot of fight in me. I know I'm a strong advocate for both my son and other people with special needs. I guess I just need to work on allowing myself to not feel that every fight is my responsibility.