20 August 2009

Not My Proudest Moment

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.

++++++++++

Sigh.

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.

14 comments:

  1. Wow. I can not believe that someone would say that to you. WOW! Not sure how I would have reacted to that comment. No one has ever said the "R" word to me about Carly. I would likely snap back a smart a@* remark.

    Sorry you had such a rough day. At the end of the day though, I know you looked at Sheridan and his gorgeous eyes and everything was all better again!

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  2. Well, you certainly let ME down! Where was the slap to the man's head that should have followed your response? :0)

    Here's a post that might make you feel better...you couldn't have done worse than me. (And I'm so, so, so incredibly repulsed by the whole scenario...early intervention services included!)

    http://lcgrace.blogspot.com/2009/07/i-am-so-unwanted-by-oz-squad.html

    I'm sorry for your crummy day...I hope today's a better one for you!

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  3. Oh, Lisa, it's amazing how ridiculously insensitive and out of touch some people are. I don't feel like you let anyone down -- you were defending your sweet "exotic" child and your instincts were right to speak out for your child. As for your choice of words, I just had to laugh, since you come across so mild and even tempered. I wouldn't have had the courage to do that myself, so you're stronger than I am. As for fighting a double header, that really stinks. I'm glad you're on the DSIA board because I think you have an important voice for our children that needs to be heard. I'm very disappointed to hear about the services because I'm sure we'll get the bad news soon. Hang in there... more important things to think about... like feeding 90 people :-)

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  4. OMG!!! I cannot believe what you had to go through that day! That man is RIDICULOUS!! I get offended when I hear the word "retard" when used flippantly by people about themselves but if I EVER heard someone say it to my FACE about MY child I think I would have WANTED to say what you said but would never have had the courage. I think I would have stood there with my mouth hanging open for God knows how long. You are an amazing advocate and you did not let anyone down. You responded how you needed to in that moment and maybe it was enough to shock the heck out of him and next time he'll keep his mouth shut. Seriously!!!

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  5. I know you're feeling bad about what you said, but I, for one, and GLAD you did. I don't know if I would have, but I do know that I would have been kicking myself afterwards if I hadn't.

    I got a call from our Service Blocker yesterday. She didn't mention the 0-3 therapies being cut, but she did say that respite and daycare assistance for that age bracket are no more.

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  6. I dunno, Lisa . . . I AM proud of you. I think your response was perfect, I really do. It doesn't sound to me like that guy's comment was born out of ignorance, it sounds like he was just being mean and sarcastic and trying to disguise it as something else. Passive aggressive asshole.

    (((hugs))) mama

    And what's this about services in California?!?! Nobody has told me anything about that, and we just had our IFSP . . .

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  7. I am so sorry about all the things that you had to go through. I am dealing with a little bit of service issues and I am frustrated. You are dealing with a whole wack of issues. So yes..just forgive yourself and let it be. I actually chucled for a second when I read that..maybe it wasn't the best thing to say but at least you stood up and said something. I have never been in that situation and I don't know yet what I would do..so I am in no way going to judge you. He was so rude that he shouldn't go away without a comment. Now let's send him some love as he obviously has some of his own issues to deal with in his his life.
    ps. I think that you are a GREAT mom and great advocate.We all have our moments!

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  8. Excellent response!

    Perhaps when ignorant people see that their ignorance will not be taken quietly... they will walk the straight path. It is one thing to think ignorantly but to put the words out there for you and your child is beyond ignorance, it is deplorable.

    I am glad that you enlightened him.

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  9. Sounds like that person was just being hateful!I would like to have seen the look on his face after your reply:)What an idiot he was!

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  10. **HUGS** I am speechless. I can't believe what that man asked you. Ignorance? Plain mean? Hard to say. Just shows me that we have a lot of advocacy and awareness work still ahead of us for our kids.
    Also, I agree with you that ST services should be based on developmental readiness, not chronological age. Keep fighting the good fight!
    I hope you are having a better day today.

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  11. Wait a minute girl, did you say that? Did you actually pop out with that retort? Cause if you did, don't apologize... you didn't let anyone down. Some times the advocate has to get out of the way of a protective and pissed off mama. xoxo

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  12. HEY- you definitely did NOT let me down. In fact, I am proud. I just wish you would have punched him the face after you said that.

    I know what you mean though...but believe me, every once in a while you gotta let the mama bear out. Even though you may think that your response did nothing to "educate" that person, I for one, think it may have. Maybe next time, he'll learn to think before he speaks. (shakes head)

    I am sorry that happened. :(

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  13. I think that was a most appropriate response!

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  14. don't be so hard on yourself! That was some really strange thing he said to you so kudos for sticking up and shocking him. Sometimes I wish I would speak my mind more often!

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