A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Monday, November 15, 2010

Me Too

"I wanna fit in to the perfect space
Feel natural and safe in a volatile place"
-Avett Brothers

Last week, I read about people who keep their child's autism diagnosis a secret, or choose not to tell people. It really got me thinking....

I do know some families who choose not to disclose their kids' diagnoses. Obviously, we are not one of those families. We tell. Autism is a tricky thing. Our kids typically look normal. If I'm in the grocery store and walking hand in hand with Little Bird, you'd really have no clue.... until she starts flapping her arms (assuming her fingers are not in her ears). Once she starts talking, anyone could see she's different. It's hard to understand what she's saying; so much of her speech is scripted. So, it's not like we can really hide it. Still, we'd never keep it secret. We are open and honest about everything we experience. Not just for me, but for you, too.

I truly believe that the most powerful words ever spoken are: me too. More than a year ago, a friend called me a talker meaning that I tell people what's really going on. That's really stuck with me for some reason. I draw strength from other peoples' experience.

A couple years ago, someone very close to me, S, had a hard time conceiving. S, like me, is pretty open, but it's not my story to tell, so I'm just calling her S, ok? She told a few of her friends. Some of them confided to her that they, too, couldn't conceive naturally and had sought the help of a fertility specialist. Until then, S had no clue these friends had dealt with this. Why?? Because both of these girls had lied and said they didn't use fertility treatments to conceive. For what? Shame? Embarrassment? Who knows. But I've found that when I remove shame from any situation, I'm way more ok to tell my truth. Through these girls, S found a great doctor and great support. There is so much support in the words me too.

That's what it's all about, really. Support. I need other people in similar situations. How ever would I find them if I didn't tell my truth? Some days I'm scared, sad, even disappointed. But never ashamed. Little Bird is the sweetest, prettiest, and funniest kid in town. Nothing to be ashamed of here! I know that I find more understanding and compassion from others when I tell the truth. I've spoken before about finding my "sisters": those who share a similar experience and are always there for me, sharing their own experience, strength, and hope. I never have to do anything alone, as long as I tell my truth.

Do you keep your child's dx a secret? Why? Why not?


Cheryl D. said...

Little Bird is quite beautiful!

We're not super hush-hush about it, but we do keep it somewhat quiet. Right now, our plan is to not even tell our daughter until we absolutely have to. We're hoping that we may not have to.

We'll see!

And, damn! You DO have a lot of facebook friends!

Big Daddy Autism said...

I do not keep it a secret. Couldn't if we tried. My boy is not flying under any radars and we let him fly his freak flag high.

Jen said...

Katie passes for "normal" til she throws down in the middle of Target or has an anxiety attack over something, (or maybe totally ignores you when you try to speak with her)so with her it probably isn't super visible, unless you knew what you were looking for. She is at the very high end, though (although not Aspergers since the kid didn't really say much til 4, hence our pdd-nos dx). Her language was super delayed, but her speech is good...you can understand everything she says (and she speaks so dang slow, you have time to understand, anyway..ha). She won't hold a conversation with you, but then most of what she says is her own thoughts and not scripted, so you wouldn't really think anything was up, again, unless you were in the know.
I am guilty of not telling everyone I should. Mostly b/c I have been accused by friends and family of being the cause of her issues, and I feel that giving them the label gives them something else to blame me for, or to altogether deny and say it is still just me being a crappy parent.
I think if Katie wasn't as HF it wouldn't be a big deal. People would be able to tell right away and it wouldn't be such a surprise. Past experience has, unfortunately, kept me from saying much unless, like I said, she is lying on the floor, mid-shopping trip, or rubbing dirt all over her legs on a group camping trip, lost in the sensory experience. ; )

Jen (run on sentence queen, and I don't even have 200 FB friends...looooser)

Jen said...

Ah, one last thing. I am also not as vocal about it b/c I feel I am somehow doing a disservice to children lower on the spectrum. I am weird, I know, but I feel that we are lucky in a lot of ways, and saying Katie has ASD might potentially offend someone who has a non-verbal, more severe child. Seriously, I have issues. At least I am aware.

Chris P-M said...

No secrets here! I find it is easier to just "put it out there" rather than let folks think their own ideas (which are usually no where near reality)

AND we did the fertility thing, AND adopted.... not concealing much am I? I'm pretty shameless too...

Heather said...

You know me- I tell everyone. I feel it saves us some weird looks and judgments.

But Lyn's post did have me thinking and I was also gonna do a spin-off of it (weird!!) about when I was dating a couple years ago----I did kinda keep it hush, hush back then. It's hard enough dating as a single mom- then throw in autism- and you're gonna scare off some people lol.

@jencull (jen) said...

I don't keep it a secret, I love my child dearly and want to help other people understand his ways and see the fantastic little boy that I see every day, which they can with a little patience and understanding.

Another biggie (but it wouldn't sway me if I wasn't a 'talker') is that I find soooo many people don't have a clue what autism is or that it can be the way it is for my child, so I am (nicely) educating people too (I hope).

Hmm, I think you might have inspired me to do a spin off too. I have to admit to getting a bit cross when people do the 'we haven't told anyone yet' routine. I completely understand that this could be the case in the early days following diagnosis when parents are still getting their heads around it themselves, very understandable. But years later?? No, I don't get that they won't have even told Grandparents at that stage!

Ok, I better stop or this will be the spin off lol.

You got me thinking!


Lynn said...

Thanks for the shout-out. I forgot to make your name a link when I shouted you out. Lame.

I like Heather's comment about the dating scene...there's a whole blog post right there. I also made a comment to one of my comments on the subject about the work environment and why you might not want people at work to know (discrimination when it comes promotion time?) or prospective employers who might think that you'll be distracted or not willing to put in long hours. In which I will never get another job because my blog is the first thing that comes up when you Google me.

We should compile all of the comments that we get because mine were all over the map. Some people saying that they are very open about it because they feel no stigma but then others saying that they aren't not because of stigma but because they don't want to feel that they have to "explain" their kids behaviors. They really ran the gamut....

Cara said...

Lynn's comment reminded me, I full on LIE now when we're looking for a rental. I kept getting turned down for rentals when I said that she had ASD. Now if it comes up I say she has some mild delays and it's nothing serious.

I think people equate ASD with poop smearing. I know it's discrimination, but I have enough people to fight with without worrying about potential landlords ;)

sherri said...

apparently I need to listen to the avett brothers. i heard an interview with the guy on npr this morning and now your quote. the universe is trying to tell me something. LB is beautiful. love that picture.

Claire Louise said...

How pretty is your little bird:) adorable.
No I didn't hide nothing. In my view the world needs awareness. Our children need to be understood. Yes we want our children to be treated in the same way as their peers but to some extent they need to be treated that bit different. What I'm saying is If a parent didn't tell a teacher their child was on the spectrum and then that teacher made the child sit in a crowded hall with all the other children shouting and clapping The child with autism has a complete sensory overload causing meltdown. Teacher tells the child to stop acting up, child goes ballistic and teacher tries to reason with child only to get a full on slap, punch and a kick.. Then that would be the parents thought for zipping it about their child's diagnosis. People will never learn to expect our children for who they are if parents are forever pretending their child doesn't have autism. We need to celebrate our kids, and show them off with pride. Ok the trying times are hard.. But the good times/days are amazing. Like you, I would shout it from the roof tops that my son has a diagnosis of ASD ( Aspergers)
We won't be telling our children it's Ok to have ASD if we hide it! What message would it give them. I love my boy so I guess I love his autism too! Anything that's apart of my child has a place in my heart.
Thanks for a great post.

Ashley said...

The whole "me too" thing is exactly why I started blogging. Too many of my mommy friends have this wall up that's all perfect and pretty. If I have to be the one that hangs out the dirty laundry (literally- my house is a mess) to break down the walls...fine. I just wanted a place where I could be honest about the real beauty of motherhood, not the photoshopped illusions. It's been so rewarding to be exposed to other mommy bloggers who are about the same "me too" thing. Thank you!

Sorry this is like two comments in one!

A lot of people are walking this insanely long road to diagnosis with us, so they're aware of Pookie's issues...even though most don't understand or are of opposing opinions. So we don't discuss it much. It took us a few weeks to leave that place of denial, so I don't judge them for still being there. The other side is that I feel like I'm not allowed to say anything until I have my official piece of paper. He's a client of CARD, his IEP says developmental delay, and his extremely experienced ESE Pre-K teacher agrees with our gut feeling of Asperger's. Yet I don't feel like I'm allowed to say that to the people who are giving us looks in the grocery store when he's scripting or flapping or having a meltdown. I have this weird thing where I feel like I need a membership card to the club or something before I'm able to say. Even though in my heart of hearts I KNOW that he's in the club already.

**SO sorry for the crazy rambling!!**

Autism Mom Rising said...

No secret here. We couldn't even if we wanted to. But, even if he were Aspergers I'd still tell. Truth is my philosphy is pretty much like yours - sharing engenders greater understanding...and greater understanding, in my book leads to great things.

I love what Big Daddy said about letting his son "fly his freak flag high". I feel that way about myself too. Some of the things I'm interested in are, well, odd (What, you don't want to go on UFO investigations?lol). But ultimately I cannot bring myself to just present whatever image I think people will resonate more with, I have to be me - and that is the message I want my son to get about himself.

Thank you for this piece. You said it much better than I could. You rock!

Jen said...

I wish I was more like the rest of you. I have to train myself not to feel so judged and blamed for Katie's issues (I don't feel I am to blame, just have people feeling that way about me). The more I think about it, the more its probably better for me TO say something so people realize what a large spectrum it is, and stop thinking only "rainman" when they think of Autism. I don't think a lot of people understand there is such a thing as high functioning Autism (that isn't Aspergers).

And, um, last night I realized Katie doesn't pass for a "normie" as much as I think she does...

Dani G said...

Thank you to everyone for your comments. This is what it's all about. Banding together. Whether we let the freak flag fly (thank you Big Daddy Autism!!) or we keep it on the down low, we're ALL in it together.

Thanks for being there to support me.

Arlene said...

I couldn’t go through my days if I didn’t have the support and advice of my closest friends and family. They have been “IN” this with me from the beginning. Like others said, it’d be hard to hide anyways with all of his behaviors.

We do tell, but we’re also very careful who we tell to. We chose not to disclose it at my husband’s job. When we started sharing our concerns about 2 years ago, they became very “worried” about his performance. So, we just brushed it off and never talked about it again. Obviously, we don’t hang out with this people. I had the opposite experience though. At the last job I had, I told them right on the interview and to my surprise I heard the magic words from the one who would later be my boss: me too! I have a child with special needs. It was the best job I ever had, makes me wish I was still in FL. I chose to tell them because even though I can do a great job at what I do, it would have been hard to hide my emotions and I do need flexible hours and accommodations in any job I’ll have, which is why I don’t have any right now, but I understand it’s not the same for everyone.

I think you absolutely have to tell in school, no matter how high functioning and how much progresses the child is doing. Yes, we’re all afraid to get hung up in the labels and that is a risk we take everyday. They would never get the acceptance, understanding and treatment they need and deserve. The more people understand about their differences, the better they will adjust and perform. School is such an essential part of their everyday life and therefore makes a big difference.

I am not embarrassed at all to tell people we meet. I love to educate and welcome them to our world. If I care about someone and I want them to be part of my life, I think they should know. However, there’s a lot of “friends” I’ve reconnected with via FB and other means who would never understand and frankly do not care, they are not really in my life, so I haven’t mentioned it. I have also felt a lot of rejection towards my family in general, especially from some of my neighbors. I wish I had the energy and time to fight the battle. Honestly, I think my time is better spent taking care of my 2very high maintenance children than to try to provide some ignorant people with the benefit of a lesson on empathy and acceptance. Gosh, I hope I don’t sound too bitter, I am, sometimes.

So, to answer your question in a nutshell, we go with the flow. If don’t get a good vibe, at this point I don’t even bother. If someone is interested and cares, I am all about sharing. I do find a lot of people are just uncomfortable with the topic and don’t want to talk about it. They like me but want to pretend everything is great with me and prefer that I don’t say much about my struggles. Not the greatest friends in my opinion, but hey, if I’ve learned something, I’ve learned that everyone has got their own little issues and I accept them how they are. After all, it is all about acceptance!

This was a long post and very therapeutic. You are inspiring me to get in the whole blog wheel.

Laura @ The Things I Said I'd Never Do said...

With both my brothers, my mom was very open about their diagnosis. She joked that when my one brother threw public tantrums, she would announce it to anyone who would listen so she didn't look like a terrible parent.

In all seriousness, she said she found such solace in the "me too's" she met. Knowing she wasn't alone was comforting.

Mom's experience is something I will always carry with me and is probably why I share EVERYTHING. Hell, I'm willing to tell the bank teller I'm cranky because of PMS. :-)

Varda said...

I am so with you there in the "talker" camp. Pretty much everyone in my life, real and cyber, (and a choice few strangers I have collared on street corners) knows all about our family's situation.

We are so matter of fact about it, that Ethan often introduces his brother as "That's my brother, Jake, he's autistic."

I have also always been open about their being IVF twins.

My feeling is that the more you tell, the more you will connect. Also? I think I just naturally have a TMI, tell-all, blabbermouth personality.

We are who we are, and we're comfortable with who we are. Take us or leave us at face value.

I better not commit any major crimes, because that "right to remain silent" thing? Pfffft, so not happening over here.

Anonymous said...

Keep posting stuff like this i really like it

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See, it's not just my mom! (since Jan 1, 2010)