To The Parent Whose Child Just Received an Autism Diagnosis

Image is a blue background with white letters which read:
"Dear Parent, It'll be okay. I promise. Here are some tips.
Love, The Gonzo Mama." Pink lips in the shape of a "kiss"
appear in the lower right corner.

Hello, readers. I've recently been giving this topic a lot of thought, as I've been going through the diagnosis process with Bravo, and thinking about how different it feels, this time around.

When Curlytop was diagnosed, it wasn't news to us, because we knew who she was, and she had been with us for over eight years. We'd been asking and asking for someone to please, see what we are seeing, and give this kid a diagnosis, so we could arm her with the empowering language and identity she would need, as she grows to adulthood. Self-identification ("I'm autistic") is such an important part of self-advocacy ("so I may need accommodation"), and we wanted to ensure she was equipped with that personal toolbox.

And now, we have Bravo. Going through the diagnosis process was different, but just as important. Autism "looks different" in girls, you know? So, it's often easier to spot in boys, and the assessments and observations go more smoothly, and it's really just "yes, it's autism," or "no, it's not." In any event, we already knew Bravo was autistic, so the diagnosis was just a formality, just like in Curlytop's case.

Even though I knew I was autistic, I wasn't diagnosed in childhood, so I had no idea what an "autistic childhood" should or would look like, when Curlytop was diagnosed. I just kind of muddled through childhood and adolescence as the weird girl who didn't understand relationships and friendships, who was always writing or had her nose in a book so she didn't have to talk to people, and had a really overwhelming obsession with numbers and counting things like the number of steps from English class to History class, the number of seconds it took to evacuate the building during fire drills, and the number of tiles in the Science room.

I didn't have an autistic childhood. I had a really difficult, painful, tumultuous adolescence, and when I learned in adulthood that it was autism, it all made sense. It was freeing, liberating, and soothing. Everything I knew about myself fell into place.

How much easier would it have been, had I been able to -- and encouraged to -- identify as autistic in my youth? A large part of me wants to believe I would have mastered self-advocacy much earlier, and I would have felt safer, more comfortable, and less like an outcast. Of course, I'll never know, but I want every autistic kid to have the opportunity to learn self-love, self-identity, and self-advocacy.

Our job, as parents, is to provide those opportunities.

When Curlytop was diagnosed, because I didn't have a model for autistic childhood, I was easily influenced by marketing, false-advocacy, and pressure from healthcare professionals. It took me a full year to gain stable footing as an independent parent and advocate for my child (and myself!), and that footing actually didn't come from parenting communities or "Autism Awareness" campaigns or healthcare providers.

It came from my growing network and community of autistic adults.

What sort of future do I hope for, for my daughter, and the children in my care? I hope for one in which they are fierce, are proud of who they are, are in possession of strong and healthy boundaries, and ask for and receive help when they need it. So, it only makes sense to start setting that future up for them by learning from people who are already living it.

If I could go back to that day of Curlytop's diagnosis, armed with the knowledge I have now, this is what I wish someone had said to me, and what I'm glad I know, this time around (some of these things I already knew, but it would have been great to receive affirmation):

1. Your child's diagnosis does not change who they are, or who you are. 

You've known your child since birth (or -- for families created through adoption, kinship care, guardianship, or foster care -- since placement). You know who your child is. You've been together for a while, and your relationship is not changed by a medical proclamation. Your child is still your child, and your job is still to make your child feel safe, secured, loved, and protected in the world, while helping them to develop into the most beautifully awesome version of themselves they were meant to be.

2. You don't have to change anything, right this minute. 

Really. It's true. Your child was autistic yesterday, and they will be autistic tomorrow, and for the rest of their lives. Taking a little time to research, ask questions, and listen to your child and your heart will not doom them to failure.

3. You DO need to decide one thing, right NOW.

Right now, before you do anything else, you need to decide what kind of parent you are going to be as your child grows to adulthood, and beyond.

Are you going to be the kind of parent who shares things like, "You might be an autism parent if..." memes, without considering if they are offensive or harmful to your child and the autistic community?

Are you going to be the kind of parent who compulsively "likes" and follows every single Facebook page or social media community that has "autism" in the name, without first learning what the page's or organization's views and positions are, and whether those positions are in opposition to the autistic community?

Are you going to be the kind of parent who shares "inspiring" videos about how a football team helped an autistic kid make his first touchdown, without first asking yourself if the video exploits the autistic individual, for the sole purpose of spotlighting the non-disabled people, just to make them feel good/seem hero-like?

Are you going to be the kind of parent who consents to and agrees to everything your child's healthcare provider suggests, without weighing the risks and benefits for your individual child?

Are you going to be the kind of parent who is supports and embraces the notion that autism "stole" your child?

OR...

Are you going to be the kind of parent who establishes healthy boundaries for your social media and real-life conversational sharing?

(Hint: Talking about your child's poop, "stimming," or other behaviors in any way that could be embarrassing or uncomfortable for your child is robbing them of their dignity, and, likely, their ability to feel they can trust you. I'm the first to admit I have been reckless in this regard, in the past, but I've found clarity and sense over time. This post is insightful, though it uses PFL (see point number 4, below), and has some excellent points for consideration.)

Are you going to be the kind of parent who thoughtfully considers the values of a community, social media group, or fan page, and the impact of those values on autistics, before joining or following?

Are you going to be the kind of parent who researches thoroughly every single so-called "advocacy" organization before supporting it, amplifying its messages, or using its symbols and slogans to show your advocacy for your child?

(For example, I always tell parents to stay far, far away from "the puzzle piece," "Autism Awareness," and other high-dollar advertising which have become synonymous with autism in general, but do very little to actually advocate for autistics, and, in fact, may harm autistics through words or policy.) 

Are you going to be the parent who doesn't rush to enroll their child in recommended therapies without researching the methods used, and the possible future implications, first? (See my post on Applied Behavioral Analysis (ABA) therapy, here.)

Are you going to be the parent who embraces everything that your child is, and helps them to become confident in their identity?

4. Learn how to talk about autism, and work through your own misconceptions. Get comfortable with the language, and get uncomfortable when people use language that doesn't respect your child.

This link has some really, really good information about five common language mistakes people make when talking about autistic children. It requires a download of a PDF, but I strongly suggest you not only download it, but also print it out for future use. Make copies to give to educators and service providers. The document is crafted by autistic voices, and when we talk about autism, those voices are the strongest -- and only -- authority on the subject.

Much debate has been seen among my blog comments and social media comments about person-first language (PFL) versus identity-first language (IFL) when talking to and about autistics.

Back when I was getting familiar with and comfortable with not only Curlytop's, but also my own, autism, I fell victim to the "PFL is always respectful, polite, and correct" dogma. However, after talking to actual autistics, I learned why a great majority of (but not all) autistics prefer IFL.

5. Decide, right now -- RIGHT THIS VERY MINUTE -- whether you are going to be an "autism parent," OR "the parent of an autistic child."

It may seem like I'm trying to exaggerate what could be interpreted as a small issue of semantics, but the difference is huge.

If you identify as an "autism parent," the emphasis -- the priority -- is on you, and your identity.

When you're "the parent of autistic child," the emphasis -- and thus, the priority -- is on your child, and your child's identity.

It's staggering how such a small difference in wording can create such a huge difference in advocacy positions, attitudes, and effectiveness.

6. Your child needs to see you advocate for them.

Your child needs to see you fighting for them... so they learn they are worth fighting for. 

Your child needs to see you educating others about autism, autistic rights, acceptance, and inclusion... so they can learn to teach others the same.

Your child needs to see you changing the world for them... so they can change it for others.

PARENTS WHO HAVE AUTISTIC CHILDREN: What do YOU wish you had known, or done, when your child was diagnosed?

PARENTS WHOSE CHILD WAS RECENTLY DIAGNOSED: What questions, as the parent of a newly-diagnosed child, do you have?


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The First Day of School... Kind Of

We all got up this morning, with big plans.

Mine was to get the kids off to school, send Pumpkin off with Mr. Wright to take pictures of some house a million miles away, enjoy an adult beverage or six, and take a bubble bath. Maybe crawl back into bed. Whatever it ended up being, it was going to be gloriously kid-free. (See photo.)

Yessssssssss...

So, I got the girls on the bus, and off to middle school:

And got the boys ready:

But I decided to take the boys to school, myself, rather than putting them on the bus, because Bravo had not yet been assigned to a teacher. 

Here we are, on the first day of school, and the kid DOESN'T HAVE A TEACHER, YET.

Let me back up a little...

Our district has a pre-K program available for kids who qualify for it. Basically, if their assessments show they're deficient by a certain percentage in one area, or a cumulative percentage over all areas, they're "in." Well, Bravo came to us with an IEP, so he was "in." He finished out the year with the pre-K program, and at the end of school, his teachers told him how much they would miss him, and how excited they were that he was now going to be a BIG KINDERGARTNER! Woot!

They may have also said something like I needed to fill out a packet for Kindergarten, if he was going to be in district when school started, but, you know, we're doing kinship care, and the plan is for him to go home, so back in June, I had no idea if he was going to be around when fall came, so I sort of filed the information in my "Think About It Later" file.

And there it stayed. Right up until Monday, when I was reminded that he still wasn't registered for school. Aw, firetruck...

So, on Monday, I packed the baby into the stroller, walked a couple blocks to the district office, and filled out the paperwork for him to be a BIG KINDERGARTNER, and turned it in (not without some struggle, because I don't have access to a lot of necessary documents, like his birth certificate, and so on). But, I got it done. 

Then, I was reminded that if I wanted him to attend the same school as his brother, I would need to "choice" him, and that was a completely different set of forms.

Let me back up a little further...

A few years ago, the boundary lines for our schools changed. Our house is in this weird little pocket that got changed from the school Curlytop and Snugglebug had been attending, to this other school. At that time, we sat down with the team, and determined it would be best for the girls to stay in the school they were already in, since their supports were already set up, we had a great working relationship with the team, and it was a familiar environment for them. So, we just had to "choice" them to the school they were already attending. And it was no big deal. 

So, when we got the boys, we "choiced" Alpha into the school Snugglebug was, and had been attending for years, because... one bus, convenience, and all that. (Curlytop had moved on to middle school by that time. Interestingly, she moved on to a middle school out of our boundary, because of the elementary school she had been "choiced" into. Snugglebug joined her, there, this year.)

Anyway, I filled out the choice forms, and was told we should have an approval by Tuesday, unless for some weird reason the superintendent decided to deny it. Good thing, since school starts on Wednesday, right?

Yesterday, I got the call that it had been approved, which was awesome. I asked who his teacher would be, and the district rep didn't know, but said the school should have that information for me. 

I was tied up yesterday for quite a while, and didn't get a chance to call the school until after everyone had already left the office, so I was a little anxious, knowing school would be starting today, and poor Bravo still didn't know who his teacher was.

So, this morning, I just drove the boys to school, and trotted into the office with Bravo. "Who's his teacher?" I asked.

"We don't have him assigned to a teacher, but we should have that information for you by tomorrow."

BY TOMORROW? I mean, this kid was sitting there, in the office, with his backpack on, and his shoes that weren't scuffed, yet, and his sweet little clean face, and all the other kids were heading off to their classrooms, and we would know tomorrow who his teacher was?

"So, what do I do? Do I just... take him home for today?"

I got a blank stare from the secretary. After a moment, she recovered, and said, "Kindergarten starts next week. You know that, right?"

Ohhhhhhh...

Anyway, here's what my plans have been changed to, today:

I think he's a little disappointed. I am, too.

I swear, Southern Comfort, we will see each other again, soon.

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Somebody is Always Broken or Bleeding

Last night I cut my finger while slicing a loaf of bread. It’s not an unusual event. In fact, I fillet myself quite frequently. If Mr. Wright had his way, my kitchen tools would be pared down to rolling pins and spoons, though I frequently manage to find a way to injure myself with those, as well.

I quickly wrapped a paper towel around my bloody digit and set off in search of an adhesive bandage. An hour later, I gave up the search for the elusive bandage. The bleeding had pretty much stopped by then, anyway.

There are few things I can count on in my chaotic life, but there are two facts I’ve come to accept as the noble truths of The Gonzo Mama’s world. The first is that I’ll never find an adhesive bandage when I cut myself. The second is that if one of our kids is going to get hurt, it’s going to be on my watch.

Sure, there have been rare exceptions. Pockets was hit by a car in a crosswalk during a visit with my ex-husband. Curlytop was bit by a dog and Mr. Wright had to spend the night with her in the hospital while she received intravenous antibiotics while I was out of town making the cake for my friend’s 50th birthday party. The Dude cracked his collarbone while sledding with friends.

Still, the majority of the blood and busted bones occur when I’m the only adult in the house.

I have an almost pathological fear of blood and broken body parts. I was the first student in my school district to challenge the dissection requirement in sophomore Biology. At the time, I cited my vegetarian and animal rights principles, but the truth was much simpler. I just can’t stand the sight of blood, incisions or anatomical parts not being where they are supposed to be.

When Pepper executed a poorly-landed flip on the bars at the park and broke her nose, there was a lot of blood. I mean, slasher film amounts of blood; buckets of it. Somehow, I hadn’t properly planned for a broken nose when packing the car for our outing to the park. All I could offer poor Pepper en route to the emergency room was a handful of Taco Bell napkins and a very dirty beach towel.

Luckily for us – and those unfortunate enough to be traveling on the roads that day – I only had to drive about six blocks with the radio drowning out the sound of hysterical shrieking.

Pepper, however, stayed pretty calm.

When we burst through the doors of the ER, the staff responded in a rapid, practiced manner. “Let’s get that kid into the back for some x-rays, and for the love of God, give the mom a sedative!”

GirlWonder’s name might imply that she has superpowers. I’m not denying that she does. Flying just doesn’t happen to be one of them. When GirlWonder was seven, she fell out of the neighbors’ tree house, compound fracturing her arm. She ran home, holding her grotesquely disfigured arm in front of her. (Insert Sesame Street™ closing line: “Today’s arm is brought to you by the letter Z!”)

Something about broken bones triggers my gag reflex like nothing else. It’s hard to convince a child that everything is going to be okay when you’re alternately dry-heaving and screaming like a banshee.

The ER visit was short, and revealed that GirlWonder would need immediate surgery. The doctor summoned the anesthesiologist. “When you’re done with the mom,” the ER doc suggested, “why don’t you stick around and put the kid out for surgery?”

Curlytop has more nosebleeds than a boxer with a bad block, but the little dickens only gets them when Daddy is gone. I’m starting to develop a conspiracy theory.

The problem is, we never have minor injuries. If my family is going to get hurt, they’re going to warrant inhuman amounts of direct pressure, an emergency room visit, surgery, or all of the above. Why bother with adhesive bandages?

I would have received better results if I’d actually severed the finger. Clearly, it’s time to sharpen that bread knife.

Photo credit:

http://www.flickr.com/photos/scherre/ / CC BY-NC-SA 2.0

Ugly American: The Gonzo Mama in Japan

A light dusting of snow covered us as we made the five-minute walk from Tokyo Station to our hotel. At the entrance, I stooped down to put something in the small trash bin near the door. The debris fell out of my hand and I crouched low, picking it up. I didn’t crouch alone.

The doorman was down there with me, helping me stand and intent on relieving me of my luggage. “Really, I can stand on my own,” I wanted to protest, but he was so earnest I let him help me up.

As we approached the front desk, a uniformed woman made her way into our path, bowing and offering us each a clean, dry washcloth. At the front desk, I whispered to Mr. Wright, “What do we do with the washcloth?” He shrugged. The front desk guy spoke English well enough to get us checked in, so I went for broke.

“Can you help me?” I asked. He nodded vigorously in response. “What should I be doing with this washcloth? I mean, should I be wiping off my wet shoes, or drying my face, or what?” Apparently, his English training didn’t include answering basic etiquette questions from ignorant Americans, because he smiled and nodded some more.

I discovered what to use the washcloths for fifteen minutes later when Mr. Wright made my dinner in our room’s electric teapot and it boiled over, spewing boiling water and piping hot rice stick all over the top of the dresser.

My first public restroom experience left me feeling like a dirty, ugly American. The toilet was confusing enough, with its buttons: one for bodily function-masking sound to play while the user does her business; one for a “powerful deodorizer;” and two (two!) for bidet functions. “Would you like a rear or frontal water attack?” it asked.

I’d learned my lesson about playing with the loo buttons back in our hotel room, when Mr. Wright pressed the “front wash” button, “just to see what would happen,” and got a face full of water. Unbelievable – thousands of miles away from the toddlers and I still had to shout, “Stop playing with the toilet!” Anyway, I resisted the urge to punch the button for a powerful deodorizer, since I wasn’t sure exactly what odorous target it may be seeking.

Placing my hands under the faucet, I was pleased to be at a simple sink – no confusing buttons; just a simple pump for soap. I pumped twice, and the liquid that covered my hands was thin and watery, unlike the thick, shiny handsoap we use at home. I rubbed my hands together vigorously before rinsing under the running water, taking notice of the sign that said, “Prevent disease by washing hands and gargling.” Gargling? Sure enough, the ladies to either side of me were gargling with gusto.

Feeling a bit awkward about being the only gal unsanitary enough to leave the restroom before gargling, I placed my hands in the high-powered air dryer, and then exited. Mr. Wright was waiting for me near the doorway. I showed him my hands. “I think I just washed my hands with mouthwash,” I said.

He took both of my hands and pulled them to his face, inhaling deeply. “Ah… minty fresh!”

People carry mouthwash cups with them into restrooms. They also carry tissues, since some public washrooms don’t have toilet paper. I saw one man heading into the men’s room in Tokyo Station with a pair of chopsticks.

I don’t even want to know what he used them for.

We read that it is extremely rude to gesture with one’s chopsticks. We were told the same by our travel advisors. Somehow, in the confusion of engaging in conversation while consuming enough food to feed a third world country, Mr. Wright and I consistently forget that advice. We’re animated talkers, my husband and me, and it’s just so hard to break habits that are ingrained into every fiber of our being.

Our saving grace is the very nature of the people of Japan. They are patient and kind. They dismiss our faux pas like we dismiss our toddlers’ inappropriate exclamations and less-than-perfect table manners.

This week, I consider myself a daughter of Japan. Like my uncouth daughters, I ask question after question about customs, food preparation, traditions… the equivalent of a small child’s “Why? Why? Why? WHY, Mommy?”

The only difference is: I’m taking notes.



Photo credits:

http://www.flickr.com/photos/toddmecklem/ / CC BY-NC-ND 2.0

http://www.flickr.com/photos/jpellgen/ / CC BY-NC-ND 2.0

There is No Japanese Word for “Vegan”

Mr. Wright and I have been collecting every bit of information we can find about Japan, in preparation for our trip this month. We’ve Googled; we’ve Wikipediaed; we’ve talked to friends who lived in or traveled to Japan.

A study guide we found advises we will be expected to remove our shoes and wear slippers when visiting a home in Japan. The slippers are to be worn at all times indoors, except when using the bathroom, where “house slippers” are to be replaced with “toilet slippers.” Care must be taken not to forget to change out of the toilet slippers before returning to other rooms of the house. A girlfriend from college, who lived in Japan for several years, added that it’s regarded as unsanitary to put a nude or almost-nude foot into guest slippers; and she suggested I take footie socks along to slip over my stockings.

The same guide discusses after-hours business meetings, which may include dinner and drinks, which our hosts will insist on paying for. The guide gave a warning that “hostess bars” are not a good idea for businesswomen to attend, but didn’t say exactly what a hostess bar is.

I mentioned this warning to Mr. Wright, and suggested that Japanese hostess bars may be akin to American “gentlemen’s clubs.” Mr. Wright disagreed, opining that “Hostess bars” were probably establishments where Twinkies, HoHos and Ding Dongs were served.

“Probably not a good idea for businesswomen who are watching their weight,” he said. “The book probably just left that last part out.”

One of our Japanese colleagues who will be traveling with us tells me “hostess bars” are simply high-priced clubs that provide expensive atmosphere and sake, but I’m not sure I believe him.

If he and Mr. Wright head out to a hostess bar, Mr. Wright had better come back smelling like chocolate and cream filling. Enough said.

Business cards have a level of importance and regard in Japan not seen in the United States. We may be accustomed to casually handing over our business card, or taking an acquaintance’s card and haphazardly slipping it into a pocket or handbag. Not so, in Japan. The Japanese regard business cards with particular reverence. A business card is a serious thing, recording the bearer’s credentials. It is to be offered – and accepted – with two hands and a slightly bowed head. The receiver of the card should take a few moments to study the card, absorbing and carefully committing to memory the information contained upon it. We will be expected to solemnly study and “understand” the card, even though we don’t read Japanese.

It’s all about ritual.

I was relieved to hear that many of the Japanese read some English, even if they don’t speak it; and some may even attempt to speak English with us. While I found the knowledge comforting, it made me regret my lack of foreign language education. Most developed nations in the world have at least a basic understanding of our language. How arrogant are we Americans to assume that everyone else in the world will speak our language, when our schools – with the exception of a small percentage of bilingual and immersion schools – only teach foreign languages as a college-prep offering?

I feel rather ashamed that I speak no Japanese, yet will be interacting with the people of Japan for a week.

At a pre-travel meeting with our team, I asked our Japanese colleague, “Is there a Japanese word for ‘vegan?’ Or is it such a strange concept in Japan, no one ever needs to say it? Will I be able to eat in Japan?”

After a moment of consideration, he answered, “It’s really the latter. You might want to pack some food to take along.”

If you’re in Japan this month, stop by and say, “Kon'nichiwa.” Or, “Hello,” if you want me to understand you. I’ll be the ignorant American with footie socks and a peanut butter and jelly sandwich, peering in the windows of the hostess club.


Photo credit:

http://www.flickr.com/photos/24443965@N08/ / CC BY-NC-SA 2.0

File This Under "Insanity Defense"

I make no excuses for being a stickler for good and proper use of the English language.

I like to think I am pretty tolerant of strangers using words improperly or using "non-words" in what they think is an intelligent way, but hearing those close to me do the same is like driving four-inch nails into my skull.

Yesterday, someone close to me said, "irregardless." Can I just say that that "word," more than most, irritates me to no end? It's actually defined as NONSTANDARD. That is, not a proper word.

Someday, someone will be earnestly trying to make a point and spew, "...irregardless of the fact..." and I will go on an intercontinental grammar mercy killing spree.

I groused about the "irregardless" nonsense on Facebook, and found that my friends have similar peeves:

• People mispronouncing "superfluous"
• "Supposably" instead of "supposedly"
• "Freshly squozen orange juice"
• "Fusstrated" or "flustrated" instead of "frustrated"
• "Taunt" instead of "taut"
• "Bedroom suit" instead of "suite"
• "Window seal" instead of "sill" (okay, that one is mine)
• "Valentimes" instead of "Valentine's"

What's going to drive you to copping an insanity plea, grammatically speaking?

Photo by publik15

The Dumbing Down of America

For those lucky enough to know The Gonzo Mama in real life, it comes as no surprise when she refuses to vote for a candidate whose campaign literature appears to be crafted by someone who failed to pass middle school English.

Routine, too, is the sight of her red-lining a direct mail piece and sending it back to the offensive junk mail monger with editorial notes... in his own postage-paid envelope, no less. That's right - the illiterate pile of moose droppings gets to pay for the pleasure of reading The Gonzo Mama's list of reasons why he sucks.

Call it a severe case of "grammarphilia," if you must. The fact remains that The Gonzo Mama has a very low tolerance for poorly-constructed written material and perfunctory use of the English language.

In her essay, Education Limbo: How Low Can You Go?, Mama clearly outlines why our nation's schools are to blame for this widespread and offensive epidemic.

It's the latest installment of her column over at Motherhood: From Egg to Zine (and everything in between). Check it out, and rant along!