send in the clowns

*

Bratty Kid: I want a bicycle.
Jeremy: Listen, a bicycle is going to take a lot of ball00ns and frankly, Uncle Jeremy is a bit tired. How about I make you something else?
Bratty Kid: I just want a bicycle!
Jeremy: Why… why are you yelling at me?
Bratty Kid: Make me a bicycle, clown!
Jeremy: All right, I’m going to make you a bicycle. But I don’t want to make you a bicycle.
Bratty Kid: Shut your mouth, funny guy, and make it.
Jeremy: Take that, you hyena, don’t say thank you.

~ Scene from Wedding Crashers

Did I ever tell you about the clowns? Well, not clowns really, but that’s how they ultimately came to be affectionately known in my house after the ‘incident’. As in, ‘Oh my God, are you checking on the clowns AGAIN?’ I assure you, I mean no disrespect. I happen to love clowns.

It was a chilly night last April. OK, I’m lying. I have no idea if it was chilly or not, but I kinda thought that sentence sounded neat. I live in New England. It was probably chilly. And rainy.

Anyway, I was poking around on WordPress. I like to check out the Referrers and see how people link into my blog. I find it fascinating (and sometimes a little creepy) to see how people end up here and to have some idea of who my readers are.

For example, last week I discovered that I’ve been listed as a resource on a website serving Australia, Vietnam, Indonesia, Phillippines and Pakistan. They describe Diary as words of encouragement for new families – how cool is that? I seriously have to wonder how let freedom ring translates into Vietnamese, but hey, still cool. Anyone linking in from CLAN, welcome!

Anyway, back on that evening in April and for a couple of days thereafter, I continued to get incoming links from a site called ball00n headquarters. I assumed it was some kind of Google search fluke and didn’t think much of it. But eventually, there were well over a hundred links from ball00n hq, so I decided to follow the link back to them and see what was going on.

What I found was a discussion group revolving around the post that I had written the day before. The website was apparently not protected or private in any way as I was able to see the whole thread simply by following the link. I wasn’t able to respond, however as I needed to be a member in order to do so. ( Note ~ Their posts are in italics, copied unedited; my commentary in between their posts is in bold lettering.)

Curious story I ran across. No it wasn’t my show.

the $240 ball00n animal (that wasn’t a monkey) redux

http://adiaryofamom.wordpress.com/

I am trying to figure out what the heck she is complaining about or if she is or

not.

~ Innocent query: Hey guys, anyone know what the hell is this about? Fair enough, right?

I don’t think she’s complaining about the entertainer, or his fee, just at

her own foolishness at setting her autistic kid up for failure in that

environment.  I bet she’d have been thrilled if her kid could have enjoyed

Big Joe’s show, but as it was, she couldn’t, and all she got out of it was a

dog-shaped monkey.

Lessons learned:

-always ask about the b-day kid’s favorite things

-check on special needs of those present

-make sure the b-day kid has the best time, and if you can’t, do something

extra for just them, even if it means staying longer than you’re booked for.

~ Ooh, loving this lady. Preach on, girl. Yup, just a Mama who is ‘fessing up to having made some significant mistakes but who then did the best she could to make her kid’s birthday party work under some pretty challenging conditions for her kid. Right? RIGHT?

What this Mom is saying is that her little sissy girl needs to get

out from under her mothers dress and play with the rest of the world!

Don’t blame the Entertainer that her “little Princess” is just too

sensitive to “loud noises” like all her friends laughing, at what

sounds like a really good show!

Another classic example of a mother stiffling(sp?) their children

from enjoying and participating in Life. It’s all the Mom’s fault!

Like when you go to a table that has beeh watching you work, and

say “Hi what can I make for you?” and the mother shoo’s you away

with “oh, she’s afraid of ball00ns!”

The fact of the matter is the Mom’s afraid of ball00ns and now has

poisoned the kids too!

Let the kids be kids!!! Can you tell I don’t like these mothers?

AARRGGHH!@!!

~ Um, say whu?? Seriously? I .. um .. wow. Someone? Anyone? Beuller?

No she is not upset by the entertainer.  Her daughter is autistic.

They planned this big party, the daughter wanted this entertainer

that was at her school.  She got the first animal, but the party

proved to be too much for her condition.  Parents had the party go on

without the bday girl – she wanted to stay upstairs.

~ At least somebody’s actually read what they’re commenting on. That will surely clear this all up, no? NO?

Seriously?

No?

I guess I missed the autistic part, when I quickly scanned the blog.

But I can’t help but think that the mother is a bit over protective as well

~Dude? reeeeeeeally? I mean, reeeeally?

How?  She let her kid pick the entertainer.  She let her kid be the

center of the activity. She encouraged the kid to be part of things

even after getting scared. She did let the girl leave the party in

order to sit with her in a quiet space (something not at all unheard

of for an autistic child), but she had a house full of kids. Had she

forced her daughter to stay there, she would have had a real

disaster.  This way, all of the other kids could enjoy themselves and

no one else got upset.  I think the mom did a great job of trying to

provide what her daughter needed without forgetting about all the kids

in the house. And she still didn’t give up on her daughter. She gave

her all the opportunities/encouragement in the world to return to her

friends.

~I think I’m in love!

It doesn’t seem like the mother is complaining about the entertainer, just

complaining about the difficulties of living with autism.

However, the tone of the post sounds like she is surprised about the outcome

of the party, which doesn’t make sense to me. It doesn’t sound like the

mother prepared her child for what would happen at the party….especially

compared with all of the other preparation.

Kids with autism and many other disabilities often get used to routines.

While having the entertainer and lots of other kids at school is one thing,

have the same thing at home can be an entirely different scenario. It can be

really important for families to plan with their kid on what kinds of

options the kid could have if the situation gets overwhelming.

The parent knows the child best and she could have done a lot more things to

make sure that her kid had a good time:

-Informed the entertainer ahead of time that her daughter would want a

monkey

-Let the entertainer know that the child has sound sensitivies–you don’t

need to be loud to have fun!

-Have prepared an “escape” plan with her daughter—What the daughter could

do if the situation got overwhelming, perhaps the daughter could have even

stayed in the same room…like she could have a special bean bag to sit in,

or a blanket to get under or some other comforting activity or place.

-Do a run through with the kid so she’d know what to expect, that can be

huge with autistic kids!

-Know that even if things go “wrong” that it isn’t a disaster. The kid has a

new experience, it sounds like she was able to build on it for the following

year and all of the other guests had a good time.

She also did a lot of things right: She recognized her kids triggers,

comforted the child and didn’t let it interfere with the good times of the

other children.

As entertainers there are questions we could ask to make sure that kids with

disabilities have a good time…that is, if we are informed of the situation

in the first place! Some of the suggestions above, like spending extra

one-on-one time can be huge. A kid with special needs might not want to be

in a skit….but they also might just need a different way to be on stage!

Hopefully a parent would let you know about this ahead of time!

~ OK, this lady’s on her game. I did actually do most of the things on her list of what I ‘could have done’ (not the least of which was a long conversation with Joe ahead of time detailing Brooke’s challenges), but no matter, she’s thought this through and she makes some excellent points. I should not have been surprised by the outcome of the party. And you know, she’s right, if things go ‘wrong’ it isn’t a disaster. But it can be really hard to see that in the moment.

NEXT?

Sounds to me like the mother of an autistic child sharing her

experiences, and the folly of ‘best’ laid plans. Nothing sounds like a

complaint against “Big Joe”. She noted how much the other kids enjoyed

the show.

Other than trying to have a party like the other kids have, but with a

child not able to cope with every situation like the other kids, the

mother’s reaction seemed very much in tune with what I would expect of

a parent in that situation, having spent years working with children

with various special needs, including Autism.

I have done a party for Autistic twins; I did get to meet ONE of them;

the other never left his room.

But, yeah, we’ve all probably had the parent who has irrational fears

of ball00ns transfer the ‘blame’ to the kids. That’s life. Thankfully,

most just grin (or is that a grimace?) and bear it for the benefit of

the children. All part of the parenting life.  :-)

~ This guys is a bridge builder. I’ll buy into that.

Sounds like mom did the right thing.  Unfortunately know really knows

how special needs children (or adults) will react.  I think she was

just frustrated that her child couldn’t enjoy what was to be a

special day for her.

This story has taught me, though, as an entertainer to now ALWAYS ask

if there will be any special needs children at the event so that I

can adjust my performance accordingly.

I have performed for many special needs people in the past, but in

each case, mom or the event coordinator, let me know up fron that

there may be a problem.  One of my highlights was having a blind

child help me onstage in front of everybody, and turning that child

into a hero!

~ Oh my God, ‘this story has taught me’! How cool is THAT? This ridiculous situation has actually turned into something positive! The power of blogging! Who on God’s green earth would think that this story would have reached someone who could learn from it? Sweet!

This went on for a while with mostly innocuous comments following the ones I’ve printed here. I’d almost gotten bored with obsessively checking to see what they were saying. Almost. And then there was one last entry that seemed to finally quiet the storm and send these folks onto their next victim. Thank God.

She is not complaining. The blog is “Diary of a Mom” and is the

shared emotions of a mother with a child that has Autism– “I pass

another mom whose husband is walking her son around the neighborhood

because he too had to escape the room. She sees my red eyes and

quietly says, ‘This is what we do.’ I feel better. And worse.”

This is the public display of the private feelings of a mom trying to

cope.  If you go back to read some of the other posts this mother

made, you will find days of Joy, Anger, Shock, and some of Wonder.

It is a diary and it is what it is.

~ ‘It is a diary and it is what it is’. Words to live by.

A – friggin – men.

ed notes ~ Luau was opposed to my posting this, which is fair enough considering that he had to live with the fallout of the first tango. In deference to his opposition, I changed all the ‘oo’s in bal00ns to zeroes. Hopefully that will help prevent triggering a red alert at ball00n headquarters this time. When I asked for a trusted friend’s opinion, she wisely suggested that I de-snark some of my snarkier comments. I did. Mostly. But I decided to go ahead and post this for a reason.

I think it’s important to clearly see how we can be perceived. To know where more work needs to be done and to understand that we may indeed look like overprotective helicopter parents to some who don’t get it.

I also thought that some of these folks made some really valid points. That for our kids, parties (and a host of other things) are not necessarily going to look the way we might have thought or hoped that they would. That that is OK. That despite our best laid plans, we may need to make adjustments on the fly. That even when we let our kids take the lead, we still have to parent them. The party was all of Brooke’s design, but it was my responsibility as her mom to structure it in a way that would actually work for her. That to some people, the word ‘autism’ offers no explanation whatsoever.

I think those are good things to know, so I thought I’d share them.

And I’d like to thank those who posted them in the first place.

Thank you.

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12 thoughts on “send in the clowns

  1. I’m still just trying to absorb that some parents have “irrational fears” of balloons”. Having said that, clowns (of all kinds) scare the hell out of me.

  2. umm…
    I’m still trying to wrap my mind around the entire “discussion.” Funny how some of those characters turn out to be as creepy and mean underneath the makeup as some of us think they are, and that others are genuinely caring and sensitive. Hmm.

  3. okay, at first take, this is hilarious. i mean, clowns.

    the fact that they have a blog community.

    we use ‘love’.

    do they use ‘honk’?

    aside from all that, it is very illuminating about how our kids (and we) are perceived…and it gives us insight in our planning and communication with the rest of the world.

    it’s striking how sort of cruel and judgmental people can be of one another, my honk comment notwithstanding.

    clowns. i dunno. i think the creep factor for most people has to do with the enforced merriment that is supposed to go along with them.

  4. I don’t know, I thinnk it’s kind of neat that they actually tok the time to dissect and discuss and to learn not only from your words but from the experiences of their colleagues.
    I’ve always liked clowns and think the crappy horror flicks gave them a bad image. Of course, my personal experience includes knowing a world-class mime or two when I was really young (friends of my grandmother) so I got to see the people beneath the makeup (at that ages I kinda thought mimes/clowns were similar–some are).

    Look at the whole thing like a “small soap box” moment.
    p.s. LOVED talking to you yesterday! xoxo

  5. Okay, I *had* to find this actual thread – which I did. I really liked how most stood up for you (and our kids) and put that one guy in his place. Most funny was the comment how your clown should join their group so he can learn to make a proper monkey! LOL.
    I’ll be sure to keep their suggestions in mind – there really were some very good points made. Thanks for sharing Jess.

  6. It’s good to have a little window to see how non-autism parents (and those not in-the-know) perceive our parenting. I’m sure I look extremely overprotective for not letting my 14-year-old son ride his bike to the grocery store. Others would have no way of knowing the risks involved – the sensory issues of loud, sudden noises from trucks going by, the fact that he would flail if an insect flew near him and could easily veer into oncoming traffic. But I’m sure to outsiders, who don’t know any of that, I look disturbingly overprotective. I’m glad you wrote this post – we all need to be aware of this.

  7. Now you’ve done it Jess. Pissing off the cl0wns! What with all that bad mothering. I’m glad Glinda the Good Cl0wn had the voice of reason. I wouldn’t let one negative cl0wn get you down.

  8. I do like that you posted this. It’s really interesting on so many levels. I love that the cl0wns are having a discussion around this; I mean an honest to goodness debate. I, for one, am surprised and pleased that some of them really seem to know quite a bit about autism. And take into account the special needs kids. Fantastic! As for the negative comments, I like knowing what people outside the autism community think. It confirms what I think – more awareness, more education, more jess!

    And wow, are you reaching a diverse group!

  9. I think it takes a lot of bravery to read all of those posts and, rather than go completely ballistic and defensive, turn them into something productive. Bravo! It’s no surprise that you’ve gone global – you always know how to take things that are inherently personal and make them universal rather than just about you.

  10. sarah ~ it is months later, after all .. i was not exactly mother theresa when i first read the one commenter, and i have to admit that my friend convinced me to edit out the word ‘jackass’ from the draft of the post. :)

  11. How fascinating! I was wondering just the other day how I was perceived when I dropped a five page (five! page!) single-spaced letter to my son’s first-grade teacher detailing his issues with Aspergers. My son can seem incredibly normal if you don’t interact with him closely or for very long, and I was terrified the poor teacher was thinking, “What is WRONG with this woman?” Now that she’s had him in school for a full week, I suspect she, er, gets it.

    It *is* hard not to be snarky when confronted with complete insensitivity. I might have left “jackass” in the post, myself! But I think it’s a step in the right direction for autism education that several commenters had a much more enlightened perspective.

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