You Said What, Now?

your-e-cards-miltonious-101Being an autism parent, no matter where your kid falls on the spectrum, is not an easy ride.  When you factor in other people’s offerings or responses, the result can be frustrating or even heartbreaking.

I’ve come to believe that, when it comes to any sort of disability, there are four kinds of people out there:

1/ People who either have a disability, or are related to someone who does.

2/ People who may not be either of the above, but are knowledgeable and understanding anyway.

3/ People who have no direct experience, who are ignorant but well-meaning.

4/ People who are just plain assholes.

In my 5 1/2 years of being a special needs parent, I’ve encountered all three of the other types of people out there.  If I know that they aren’t trying to be jerks, I do my best to be polite.  Sometimes, though…  I really wish I had the balls to say what I’m thinking, out loud.

Since I’m not that sort of person in real life, I figured I’d put together a list- a list of the worst things I hear as an autism parent, including how I usually respond and what I would really like to say.

Fair warning: my attitude’s showing.

1. “All kids do that”, or “All kids have weird fears.”

How I Respond:

“I guess so, to some degree.”

What I’d Really Like to Say:

“Really?  Are your kids afraid of dandelions?  Do your kids cover their ears, or slap their head when they’re upset? Do your kids break into screaming and crying fits when you brush their hair gently?”

2. “That’s funny, they don’t look Autistic”, or “I never would have known!”

How I Respond:

“You really have to spend some time with them to notice.”

What I’d Really Like to Say:

“Funny you should say that, because you don’t look like an idiot.”

3. “It could be worse”

How I Respond:

“Yeah, I guess so.”

What I’d Really Like to Say:

“I know there are kids who are lower functioning. I know there are parents with more than two special needs kids. I know there are kids in wheelchairs. I know there are fucking starving kids in fucking Africa. I’m expressing frustration, and what you’re doing is the opposite of helping.”

4. “He/she’ll outgrow it.”

How I Respond:

“You don’t outgrow Autism, you just learn how to thrive in spite of it.”

What I’d Really Like to Say:

“Do you have any idea how much therapy and extra teaching will go into turning my kids into fully functioning, independent adults? They don’t outgrow it- we just teach them how to work around it.”

5. “He/ She’s so cute. It’s a shame about the Autism.”

How I Respond:

“Why is it a shame?”

What I’d Really Like to Say:

“Why is it a shame? My kids are pretty awesome little people, if you give them a chance. They’ve just got a different way of expressing it.”

6. “They’re just trying to get attention.”

How I Respond:

“I know what ‘trying to get attention’ looks like, thanks.”

What I’d Really Like to Say:

“Really? Because I thought that all the inconsolable screaming, crying, ear-hitting was a meltdown. My kid is having a sensory-overload meltdown, you ass. They aren’t ‘trying to get attention’.”

7. “Don’t Autistic people have special talents, or something?”

How I Respond:

“Sometimes they can appear to be talented in one particular area, like anyone else.”

What I’d Really Like to Say:

“Sure. My daughter can fly, and my son can shoot fireballs out of his eyes.”

8. “I don’t know how you handle it/ I couldn’t deal with that.”

How I Respond:

“It’s stressful, but we just keep pushing forward.”

What I’d Really Like to Say:

“How do you know? Have you tried it?”

9. “Like Rain Man?”

How I Respond:

“Um… no.”

What I’d Really Like to Say:

“You know, I enjoyed that movie. It really did a lot to raise awareness for people with Autism and other learning and sensory disorders. The problem is, now everybody thinks all Autistic people are like the fellow on Rain Man. Seriously, crack open a book, or at least Google it.”

10. “Everyone’s a little Autistic”, or “She/he’s just being a kid.”

How I Respond:

“Seriously?”

What I’d Really Like to Say:

“Oh, well that makes it O.K then. By the way, thanks for undermining our struggle.”

11. “Let them stay with me for a while- I bet I can fix them.”

How I Respond:

“Thanks, but we’re handling it.”

What I’d Really Like to Say:

“Is there someplace you can go to fix your attitude?”

12. “There’s a word for that kind of behaviour: brat.”

How I Respond:

“My kids aren’t being brats, they’re just having a bad day.”

What I’d Really Like to Say:

“There’s a word for your kind of behaviour: asshole.”

13. “It’s nothing a good spanking won’t fix.”

How I Respond:

“You can’t beat the Autism out of a child, you jerk.”

What I’d Really Like to Say:

“I’m guessing your parents didn’t succeed in spanking the asshole out of you.”

14. “So he/she’s a retard?”

How I Respond:

“No, he/she is Autistic. Please don’t use that ugly word when referring to my children.”

What I’d Really Like to Say:

“That’s funny, I didn’t think my kids were even related to you.”

15. “He/she’s one of God’s special little children.”

How I Respond:

“I guess so.”

What I’d Really Like to Say:

“Why? Why should my kids be considered any different from any other kid? Sure, they’re special to me, but they shouldn’t be put on a pedestal or set apart from other children.”

16. “I hear it comes from the Dad.”

How I Respond:

“Well, that’s one theory.”

What I’d Really Like to Say:

“Well, that’s one theory…out of literally hundreds.”

17. “I’m sorry to hear that.”

How I Want to Respond:

“Thanks, but we’ve got a handle on it.”

What I’d Really Like to Say:

“Why are you sorry? My kids are awesome.”

18. “You must really have your hands full.”

How I  Respond:

“You bet!”

What I’d Really Like to Say:

“Doesn’t any parent?”

19. “He/she can’t be Autistic, because he/she speaks.”

How I Respond:

“Yes they can. Not all people with Autism are non-verbal.”

What I’d Really Like to Say:

“Oh. Well, I guess she’ll just have to stop talking, so that everyone will believe me when I tell them.”

20. “You won’t even be able to notice they are Autistic, when they are older.”

How I Respond:

“One can only hope.”

What I’d Really Like to Say:

“Do you know how many hours of therapy and specialized teaching they have already gone through? Do you know how many hours they will have to go through between now and adulthood, just to be able to function normally, like everyone else?”

21. “Everyone is Autistic these days.”

How I Respond:

“Um… I guess so.”

What I’d Really Like to Say:

“The reason it seems like everyone is Autistic these days is because it’s being researched and diagnosed better. We have better tools and tests, and are able to properly diagnose those people who, only a generation ago, might have been considered a dreamer, anti-social, or severely mentally disabled.”

22. “God only gives you what you can handle.”

How I Respond:

“I guess so.”

What I’d Really Like to Say:

“I really wish God would see fit to send a babysitter my way every so often, so my partner and I can take a break from what God thinks we can handle.”

23. “Did you get him/her vaccinated as a baby? I heard that vaccines can cause Autism.”

How I Respond:

“Yes I have, and that’s only one theory as to what causes Autism.”

What I’d Really Like to Say:

“There isn’t enough conclusive evidence to support that theory, actually. Frankly, even if it were true, I’d rather have kids with Autism than kids who die preventable deaths because they weren’t vaccinated properly.”

24. “Does he/she ever sit still or stop talking?”

How I Respond:

“Sometimes, but they are naturally very busy and chatty.”

What I’d Really Like to Say:

“Do you ever stop being an ass?”

25. “What end of the spectrum is he/she on?”

How I Respond:

“They are high-functioning.”

What I’d Really Like to Say:

“Why does that matter? Will it make you treat them differently?”

 

Well, there you have it: the things that make the Momma Bear in me come out.

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The Art of Embarrassing Mom

Mom-Confessions-Most-Embarrassing-Thing-My-Kid-Has-DoneOne of the more entertaining hallmarks of Autism is the tendency toward random acts of totally inappropriate behaviour. Considering that Jack is only 3 years old, you could also chalk it up to his being a rambunctious youngster. After all, kids have an unnerving ability to say or do the wrong thing at the right time… or maybe, it’s the right thing at the wrong time.

I guess it depends on how you look at it.

Jack has mastered the art of inappropriate behaviour, a task which he seems to regard as his God-given duty.

Read on…

The Moon over Miami

It’s a fun game for Jack to reach into the grocery cart from his perch at the front, and grab the nearest thing he can find. If you’re not quick on the draw, he’ll pitch that item- no matter what it is- out of the cart.

Imagine knowing this, and having no alternative but to place that carton of eggs you just grabbed into your over-stuffed cart right behind his perch, where he can easily grab them. Imagine that you are wearing a comfortable pair of yoga pants that have no belt, and an annoying tendency to ride down your butt any time you bend over.

Grabbing his hands and holding them doesn’t work, no! Jack screams bloody murder, as if by the very the act of holding his hands you are committing a great atrocity that will be the end of his world, right then and there. Life as he knows it is over. Give the boy an Oscar!

There the eggs sit, all pristine and beckoning in their too-fragile cardboard carton, practically begging for a couple of tiny hands attached to a mischievous smile to grab them. Naturally, because his entire existence is centered around getting in trouble (as if the resulting scolding is somehow life-affirming), he waited until my attention was engaged elsewhere, grabbed the egg carton, and hurled it like he was trying out as a pitcher out for the local pro baseball team.

Fortunately, nobody was in the way of that particular projectile. Not so fortunately, the eggs practically exploded as the carton hit the ground. I, in my terribly comfortable yoga pants that have never actually seen the inside of a yoga studio, stooped down to pick up the woefully inadequate (and now yoke-filled) carton, flashing almost my entire ass- minus even my underwear because they, too, went south- to everyone behind me.

Yes indeed, the moon CAN rise in the middle of the day.

I’ll be lucky if my Moon over Miami doesn’t appear on the People of Walmart website because, with my luck, there was probably someone behind me with a cell-phone camera at the ready, and an itchy trigger finger.

The Bait and Tackle

Jack and Jill both attend several different types of therapy for their Autism, all of which take place at a local horse farm. On this farm, there happens to be a small fenced-in play area, and it was here that I placed Jack one fine day while I talked to two of his therapists not a few feet away.

While the adults chatted, Jack played happily. It didn’t take long, however, for one of his therapists to gently interrupt what I was saying by pointing over to my son.

It was a good thing it was a warm summer day because, as I looked over at him, Jack stood by the fence staring at us adults, and calmly dropped his drawers, diaper and all. He stood there with a giant grin on his face, his bait and tackle waving in the breeze, as I stared back and groped for something to say.

His therapists laughed.

“Well, that proves it,” I said, eventually. “He’s definitely his father’s son.”

The Immortal Words

The family cat is kind of a psycho beast. She loves her adult humans, and tolerates the presence of the mini humans. She has been known to be all lovey-dovey one minute, and all hissing and biting the next.

Jack, since one particular incident last year, avoids her like the plague.

My partner was out of town for a week in November, and so I was left to look after the kids by myself. We were between meals with nothing to particular to do that day, so I sat on the couch typing away on my laptop while the kids played with their toys on the living room floor.

Or, so I thought.

One moment, they were both happily engaged, and in the next moment Jack had wandered over to where the cat was laying and grooming herself. He seemed to be just looking at her, but looks can be deceiving- especially where Jack is concerned.

Our cat found out that day that my son is a quick little bugger. In a flash, he lurched forward, his little tongue darting out to lick the cat’s head, from neck to ears.

I uttered words I never thought I would ever hear myself say:

“Jack, don’t lick the cat!”

Yup… life with my family is definitely interesting.

How to Save a Life

I believe that Jill- little 5 years old Jill- has saved a life.

As we waited at the bus stop the other morning, my son in his stroller and Jill sitting on the metal bench, I was sort of keeping one eye on my kids and the other on the passing pedestrians. While Jack happily watched the cars go by and Jill sang “Twinkle Twinkle Little Star” over and over again, I thought about how people tend to view Autism and those who have it.

One of the typical stereotypes that surround Autism is that people who fall on the spectrum tend to be loners, anti-social or just socially awkward. It’s a stereotype with some truth to it, but the fact is it isn’t entirely accurate.
On the one end of the scale, you have people on the Spectrum who are the loners. It’s part and parcel of the difficulties many individuals with A.S.D have with social interaction or appropriate social behaviour, after all. On the other end of the scale are those people you don’t hear as much about: the over-friendly types. They may still have problems with figuring out how to interact with their peers, or what is appropriate social behaviour in any given situation, but they tend to act like everybody is their friend. In these cases, they can be friendly with everyone to the point of being inappropriate or even dangerous.

It’s hard to tell a small child who has no concept of stranger danger that, sometimes, being friendly is not the right thing to do.

My kids fall on the latter scale, and it was that in particular that I was thinking about that morning.
Jill likes to talk to whomever she meets at the bus stop. I let her do it, despite it sometimes being hard to watch her, because I think it’s good for her to socialise with people- under controlled circumstances, anyway.

Besides, I’m not always sure where I should draw the line.

Anyway, back to my story.

It wasn’t long after we got to the bus stop that another woman entered the shelter. Jill, true to her usual self, immediately said hello.

I looked at the lady without saying anything; I just watched her interaction with my daughter. She gave Jill a little tolerant smile and said “hello” back. It was clear on her face, and in her voice, that the lady was struggling with something; she looked to be on the verge of tears, and barely holding it in. Without a second thought, Jill flashed the woman her patented thousand-watt smile and said: “I love you!”

The lady’s smile grew a hundred times brighter.

I wanted to tell Jill, just then, that she shouldn’t say those words to complete strangers.

I wanted to say she shouldn’t just throw those three words around, that she should save them for people she really cared about.

I wanted to tell her it was inappropriate, but I didn’t.lifesaver

I looked at the woman’s brilliantly smiling face, and kept my mouth shut. It was obvious those three words, seemingly said at just the right time by the right person, meant something- at least to that lady.

There is no way, between the sun and the earth, that either of us could have known what the lady was thinking.

There is no way we could know for sure what she was considering doing but maybe, just maybe, a friendly little girl with a bright smile and the right words saved her life.