Like a lot of people, I have my email come to my phone.
Yesterday morning, I checked it while I was getting up and discovered two that stopped me in my routine.
The first one was that a 12-year-old autistic boy was missing.
The second one was that the 12-year-old autistic boy was found “in the water.” (At the time I’m posting this, he was taken care of in the hospital because he was suffering from hypothermia. A sergeant saw his wet clothes and dry shoes at the shore, spotted him, and then went in to rescue him.)
But I didn’t know that he was still alive when I saw that headline.
I thought he, like so many other autistic kids who elope, was found dead in the water.
And I felt sick.
Sick like someone had punched me in the stomach. Sick like I couldn’t breathe in and out anymore. Sick like I had to sit down for a minute with my head down.
It didn’t matter that it wasn’t my kid. It was a kid. It could have been my kid.
Last week, we had an incident at school.
There is some he said/she said going on, but I have faith in the version of the story I heard from the bus aide and the bus driver:
While were loading up a kid with a wheelchair onto the bus, the aide noticed Simon.standing alone. No one was near him. No one was watching him. No one seemed to notice him.
According to the aide (and the bus driver), he seemed confused and had begun wandering from the bus area towards the car rider line.
So not cool.
So not cool it’s dangerous.
They did spot him, and they did get him and put him on the bus.
Nothing bad happened.
But all it would have taken was a one or more people not paying attention, and Simon could have been in the ocean (metaphorically since we’re quite far from the ocean).
Wandering down the road isn’t much better. It’s a busy road, and if he had gone in one direction, he’d wind up near some woods. If he’d gone in the other direction, he’d be heading towards the main highway that goes from Galveston to Dallas and beyond.
Neither of those options are much better than the ocean. Neither of those options are safe. Neither of those options make my stomach feel good.
How does this end?
Simon’s teacher is instituting a few new policies to try to make sure it never happens again. But we’re human. It most likely will happen again, even if it’s not on her watch.
This is life with an autistic child.
Not too long ago, we decided to start getting regular babysitting, and we picked my father’s step-granddaughter.
She seemed nice and responsible when we met her, but I wanted to get some more info on her, so I called my father.
He talked about her and about her son. He went on and on about how awesome his step-great-grandson is. So smart! So clever! So talented! This little boy was the best little boy in the whole history of little boys!
I stopped my father.
“What do you brag about when you talk about Simon?”
Too long a pause.
“Simon’s very special.”
He didn’t think to brag about Simon’s memory.
He didn’t think to brag about Simon’s smile.
He didn’t think to brag about how everyone who meets Simon loves him and remembers him for years afterward.
He didn’t think to brag about how much Simon likes to read (and how he taught himself to read).
He didn’t think to brag about how good Simon is at horseback riding, bowling, or baseball.
He didn’t think to brag about the how Simon taught himself to float and swim.
Clearly, there’s very little to brag about when it comes to his grandson.
Maybe I should make him a list.
I’m always railing about tolerance and support for individuals with autism and their families. So when I got hit by the obvious hammer last night, I felt like the stupidest person in the world.
Simon participates in Special Olympics bowling. He loves it. We love it. It’s awesome.
But two or three years ago, he was on a lane with a teenager who apparently had a few more issues than he did. The teenager first whipped out his penis and started stroking it. Not a big deal to me. Clearly, that was his thing. Okay. The aide with him told him to put it away, and he did.
I guess that bothered him, though, because when they were doing all the opening ceremonies, he reached out and smacked Simon on the top of the head.
Not a little gentle tap, either. A loud THWAP that must have hurt because Simon started crying and freaking out. Couldn’t blame him – a completely surprising smack on the head would probably make me cry and freak out, too.
The teenager was moved away, we comforted Simon, and it looked like the game was going to go on.
Something else happened with the teenager, though, and next thing we knew, he was pulled from the game and his parents were called to come pick him up.
And I thought horrible, horrible thoughts.
At the time, I didn’t think they were horrible thoughts. They were thoughts about defending my son. I was glad the teenager was tossed out. What is wrong with his parents? I thought. Why aren’t they here? Why aren’t they working with him more?
Time for the obvious hammer.
Really, Kate? I asked myself last night as I was thinking back on the bowling day. Really?
The parents (or other caregivers – I had and have no idea about his home life situation) might not have been there for any number of reasons, including the fact that maybe they were just reveling in some time off. No one wants to be a martyr, but it can be hard. It can be tiring. It can be one of those things where a few hours of time off makes all the difference in the world. Maybe they had to work to help pay for his therapy or even just their lives.
For all I knew, they had been working with him. They could have tried therapies, could have tried medications, could have tried psychological care. I didn’t know what they tried. I didn’t know what they had done. He could have been getting 50 hours a week of ABA, and it made no difference. I had no idea.
Why the hell was it okay for me to judge them?
Because, and here’s the super important thing, I DON’T GET TO JUDGE THEM. It doesn’t matter if they’ve done all or none of those things. I don’t need to make excuses. They don’t need to make excuses. Because, let me repeat it again, I DON’T GET TO JUDGE THEM.
It’s super easy to judge. It’s easy to forget that we don’t have that right. Easy to think that we know better, that we’d do better, that we’d be better. But, news flash from the obvious hammer, it’s not our business, and it’s not our right to judge them.
The sad part is how long it took me to realize that I’d been doing it in that situation. I had been proud that, while I tried to offer advice and help and experience, I hadn’t judged without knowing a situation. Fail.
Thanks, obvious hammer!
(To be fair, there are times when judgment is acceptable. A parent killing their child? Judged. A parent who abused their child? Judged. A parent who doesn’t care and neglects their child? Judged. That’s a whole different blog, though…)
I belong to many, many, many, many, many (keep going with that for a while) groups that talk about ASD and other disabilities. In one group, a mom posted something that I couldn’t help but disagree with, yet a lot of the other parents in the group chimed in on her side. So I just had to say this:
It might be a reason, but it’s not an excuse.
Let me tell you the story she shared.
The mom, her boyfriend, and her child went to a pool. The mom decided to chill out at the adult pool – who could blame her? – while boyfriend took the child to the kids’ pool.
The child is five years old, but she is at the level of a two or three year old.
With that in mind, the boyfriend is in the kiddie pool with her, and she throws in a toy. He turns to get the toy, and before he can turn back, he hears another splash.
The child had reached outside the pool, grabbed someone’s video camera, and tossed it into the pool.
The woman whose camera it was freaked out. She got upset and told the boyfriend that they had to make it right because she just bought the camera, and it was $500.
The boyfriend directed her to the mom.
The mom was outraged. “My daughter didn’t understand what she did,” the mom argued.
The woman argued that the mom’s daughter had destroyed it, and the mom should make it right.
The mom said that she would not, and if the woman was going to “be like that,” she better call the cops.
The woman did call the cops. The cops took a report, but they said that it was a civil matter, and it would have to be settled in small claims court.
The mom took to the forum to report this travesty, and a lot of the responses were in favor of the mom, saying that she did the right thing and hoping that the small claims court would rule in her favor.
Me? I didn’t say anything there because I knew I was outnumbered and wouldn’t be paid attention to anyway. But I still wanted to say something, so here it is.
Your child’s disability is a reason, but not an excuse.
Simon is autistic and intellectually disabled. Could he do something like that? Yes. What would I do about it? Be a proper parent and take the responsibility for my child’s action because, well, I’m responsible for him! Just because the child doesn’t know better doesn’t mean the adult doesn’t. If she had been there with a neurotypical two year old, would she have taken the responsibility?
Now, I understand. Having Simon home all day every day over the summer is rough, on him and on me. There were plenty of days when I wouldn’t mind taking a little break and having someone else be on duty. (And, to be fair, I did get days with someone else on duty.) I understand why she wanted some alone time at the adult pool. And I understand that the boyfriend couldn’t be on top of the child at all times. It’s just not possible. That’s how kids manage to do so many awesome and dangerous and messy things.
But that doesn’t mean you’re not responsible for them.
ESY has started back up, but in the two weeks Simon had off, we did lots of fun things. One of those was to hit the Galleria up in Houston.
Now, before anyone thinks I’m a cruel mom who forces her poor child to go shopping, please realize that he ASKED for the Galleria. I tried to talk him out of it. I offered all sorts of other options. No dice. He wanted to go shopping.
Not that he actually shops, mind you. Nope, he much prefers wandering around, staring at things, stopping to eat a cookie, and, in the case of the Galleria, checking out their awesome two-story fountain.
We were wandering around because I am one of those people that always gets lost in a mall. And there it was! Simon was super excited, and I told him to go ahead and sit on the edge because the ledge is pretty wide, and if you’re right there, you can feel the spray of the water as it hits down, and you get a cool breeze from it rushing past you. It feels awesome in the dog days of July.
What you don’t see in the picture below is that the fountain had stopped. It goes through its cycle, and then it pauses. I guess that’s when the water is all feeding back for it to run again.
Simon was waiting patiently on the edge, when – SLAM – it started back up!
He jumped. Almost fell over backwards jumped. Then he got a huge smile and settled back to watch it.
So as the Daily Show always said at the end…here it is…your moment of Zen…
Yesterday was a day of rock star parenting.
It started with one of the best parts of summer vacation – sleeping in. Not that Simon slept in, mind you. But he let me sleep in! He ignored me for a good hour or two, not even needing me to get him a drink or any food. It was glorious.
Then we went to the library. He picked out a new book: Quiet Loud by Leslie Patricelli. The book is full of things that are, well, quiet and loud. Then, on the last two pages, there are pictures of all different things that are quiet and loud. He had the book open to those pages, and so I went ahead and tried to quiz him on them, asking him about items that were in front of him. Then I made it harder. I asked him about things that weren’t on the pages: a rocking chair and a phone. He quickly told me that rocking chairs were quiet, and then when I asked him about the phone, he made the ringing noises before telling me they were loud. Score! Total communication and connection!
As we were leaving, though, he started getting upset: unhappy flapping, echolalia about why babies cry (from Elmo), and rocking back and forth in a jerky movement. I asked him why he was upset, and he said he was sad. I asked why he was sad, and he said he was crying. This is our usual exchange; he struggles with talking about why he’s upset or sad, resorting to using a circular pattern of questions and answers. After going through this for a few minutes, he said he wanted cookies. A response! And then I pulled out my rock star parenting moment. I HAD COOKIES WITH ME! Totally nailed it! Amazing!
After that, we headed to Target. Because shopping. He kept repeating a phrase, but I couldn’t understand the first word. Every time he said it, I asked him to repeat it, hoping I would finally figure it out. Finally, I asked him to spell it. And he did. R-O-T-T-E-N. I said it back to him, and after that, he repeated it, saying it more clearly each time. I still have no idea what show he got the phrase from, but still.
Three successes in one day! Total rock start parenting day!
As for today…well, let’s not talk about today.
A few days ago, we were at the comic book store, and Simon came up to me.
“Should we give the Indians food?” he asked.
For those who don’t know it, he was referring to the really horrible (and really funny, but not in the way they intended) Charlie Brown Mayflower episode.
“Yes, we should feed the Indians. Otherwise they’ll be hungry, right?” I said. I always respond to Simon’s echolalia because…well, why not?
He looked at me like I was an idiot and repeated himself, “Should we give the Indians food?”
I stopped and looked at him.
“Do *you* want food?” I asked.
He nodded. “Yes.”
Score: One for Simon, zero for mom.
This is why echolalia can be so valuable. Simon might not know how to come up to me and tell me that he wants to get food, but he can provide lines from a show that gets to it in a round-about way. And I’m good with that.
Yes, I’d love Simon to be able to communicate perfectly. I’d love for his communication to even be at a four-year-old level where he could straight out say, “Hey, I’m hungry!” But that isn’t happening yet, and that’s okay. At least we’ve been moving in the right direction.
So to everyone who thinks that echolalia is pointless or annoying, I want you to consider all the times that you’ve quoted song lyrics or the Simpsons to get your purpose across. It’s just another form of communication.
Charlie Brown Mayflower episode for your viewing pleasure (or pain):
So there’s been a lot of chatter online about having your kids do chores – “age appropriate chore” charts are popping up all over. At 8, your child can…and at 10, your child can… Except that isn’t always true. Age appropriate isn’t always appropriate. Instead, it really needs to be child appropriate.
In our case, it’s Simon-appropriate.
Yes, Simon has chores. He may only be three or four mentally, but even at three or four, kids can do a whole lot of stuff, especially if you ask them to. He can carry the laundry from the dryer into the bedroom to be folded (although he isn’t good at folding it…yet). He can put his laundry away. He can let the dog back in when she’s in the backyard. He can put his dishes in the sink. He can get out silverware and plates, with some direction.
And recently, we’ve added two new chores to the list. They are animal related. First, he now has to bring the dog’s food dish to the laundry room so that she can get food. Second, he has to refill the animals’ water dish, although we give him the water in a cup so he can just pour it in.
When we started with the water, I was a bit nervous. I wanted him to do it – I prefer to try to push him instead of just keep things at a status quo – but I could just see the water hitting the ground and making the kitchen a slippery mess pretty easily. But imagining it doesn’t make it so any more than not imagining it keeps it from happening. So I filled up the cup, showed him how to kneel down and pour the water, and then stood back and let it go.
He did great. He filled up the water dish, and now if I spot that the bowl had gotten empty, or close to empty, I can fill up the dish and call him over. He comes over, generally happy about it, and fills it up.
Honestly, I think he enjoys having chores to do. For the most part, we let him do his own thing. He watches tv, plays with toys, colors, draws, and does whatever he wants to do. He only ever really gets cranky and tries to refuse when we tell him to put his laundry away, but if we tell him that he has to do it, he may stamp his foot or make noise, but he does it. When it comes to the pets, though, he really likes them, and I think that he likes taking care of them. He pets the cats and the dog, calls them by name, and even named the newest addition (Sammy).
I don’t know if any of this is a sign of how he’ll do when he’s older and ready to transition to the “real world,” but it does make me feel better to see that he can learn to do simple tasks. Who knows? Maybe he’ll wind up cleaning up at a kennel or helping out at a vet’s office. We’ll just have to wait and see…and give him more Simon-appropriate chores to do.
On the 15th of January, the Daily Mail (which admittedly doesn’t have the highest journalistic standards) published a lovely little piece by a woman name Carol Sarler with the lovely little title “Why can’t we face the truth? Having an autistic child wrecks your life…”
Let me just start by saying…wow. Seriously. A big wow.
This piece is written by a woman who *does not* have an autistic child. Nope. She has a friend who has one, though, so, like anyone who has stayed at a Holiday Inn Express, she’s an expert.
She says that “brave and devoted mothers…have clung to the positives brought into their lives by their children” because when one child with autism is born, then “three generations of lives – I include his own – [are] wrecked, for ever, by his cussed condition.” Yep. Thanks for telling me, dear sweet Carol, that my life is now “wrecked.” It’s good to know that I’m “brave and devoted.”
That’s not enough for her, though. She points out that the parents can’t lead a “normal” life – “how many shops – or, indeed, how many customers – are going to tolerate a child who screams, bites, defecates and destroys everything within reach?”
Ah, I love people like this. The assholes. The ones who believe that anyone with any abnormalities should be locked up, hidden away. Let’s not modify ourselves and help those who are in need. Instead, we should force them to leave the public life and hide themselves away. A Kennedy at heart, perhaps?
Carol’s point is that she believes in eugenics. “…As the debate rages over the possibility of a prenatal test for autism, with abortion then optional. And, so far, most of the argument leans towards such a test being undesirable and unethical.” She even goes on and states that she never asked her friend for her opinion because “…it is hard for a mother retrospectively to wish away a living child who, come what may, she loves. But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom’s had been a life unlived? Unequivocally, yes.”
To her, it seems to a simple equation: she doesn’t want her life to be “ruined” by her friend having a seven-year-old autistic son. And while she claims that their lives are ruined, we never hear from them and we never see their point of view. It’s her points. Her opinions. Her being a total fucking asshole.
Not sorry for the language. It needed to be said.
When people like Carol can go around making statements like this, we’re mere steps away from letting people with disabilities be sterilized or put in camps or killed. Why stop by letting them be removed from the womb before they’re born?
I’d like to ask her how she feels about testing people for other diseases. If we know a child is going to have cancer, should we abort it? Because, you know, why let the parents get attached if the kid is just going to die later? And what about physical abnormalities. Those make people’s lives harder, too. Why should parents be forced to use wheelchairs for their children? Hmmm? Perhaps we should develop a test to help us determine who is most at risk for Alzheimer’s and dementia. Because, you know, those people are also a burden on their families and society as well. Why let them live?
Oh, wait, because we’re not a barbaric society who kills what it doesn’t understand. We don’t destroy for the sake of our own ease. We learn to accept and work with what we’re given in life. We love our fellow men and women. We support those who need support and spend our lives in the service of others, not constantly worrying about ourselves. At least, that’s in an ideal world, right? The kind she wants to create through hatred and fear, not love and compassion.
Don’t get me wrong, I know that I’m going to find insensitive people just about everywhere. But I didn’t expect to find them in out-patient therapy. (If you want to know why I’m currently in out-patient therapy, you can check out my other blog about my mental issues…)
Anyway, so the other day in therapy, while she was talking, one of the other women – let’s call her Zelda – said that her brother was Autistic, and he was around her age. She’s about 60, ready to retire, and he’s living at home with their parents still. She pointed out that, at the time, they didn’t have much they could do to help him, but she felt like it was better now. She commented that he was the family’s project. I thought about talking to her then, but I decided against it.
So the topic was put to bed, and no one else talked about it…until…
Something came up, and she asked me, before therapy started, about whether or not I had any children. Of course, I said, yes, I have a son, he’s 13, and he’s Autistic. Zelda asked a few questions, and when I explained that he was fairly moderate to severe on the spectrum, she said, “Oh, that’s bad.”
“No, it’s not,” I corrected her. “It’s not bad at all. It’s just what he is.”
She back-pedaled. She didn’t mean it *that* way, you know. She was only trying to say that she knew it was hard. Okay, I’ll take that. It’s hard on him. It’s hard on us. It’s hard on his teachers. It is hard. But it’s not bad.
Which might be why I was already in the fight-or-flight mode when another woman, let’s call her Aileen, said that she was there because of anxiety and her family. Her family drove her crazy, she said. They wouldn’t leave her alone. Even when she tried to take a walk by herself, they wanted to come with her.
“It’s so retarded.”
Yup. She said that. About the fact that her family wanted to be around her all the time.
Now, don’t get me wrong – I’m not saying that they’re stupid for wanting to be around her all the time. But I do think she’s pretty uninformed to use the r-word in a psych setting.
But no one said anything. Not even the therapist leading the session.
Because I’m not one to shy away from confrontation when it’s appropriate, I went ahead and raised my hand.
“Hey,” I said, “I’m sure you didn’t mean it this way, but, see, I’m part of this movement. Spread the word to end the word. The word is retarded. I know you just said it, but that’s kind of the problem. It’s pretty insulting to use it as an insult. My son has intellectual disabilities, and so I’m kind of sensitive to hearing it…”
I know I said more than that, and she looked a bit surprised.
I brought up the need to be respectful of all people, and I pointed out how if she was had said something that insulted another group of people, I still would have brought it up because it is disrespectful to insult anyone, especially if they’re not there to defend themselves.
She was cool with it. She apologized, said she hadn’t meant it that way, and said that she normally tries to be careful because she had a cousin with…and she stumbled over it (because I guessed she hadn’t heard it before)…intellectual disabilities.
And then the therapist got involved and made sure that she was okay with me calling her out and asked if I often did that, and I said that, yes, yes, I did. All the time. Because it was important to realize that insulting people because of their disabilities was not okay, and like none of us would like it if we were turned into negative slang, we shouldn’t do it to other people.
I hadn’t expected to have to defend myself, or my correction of someone who used a word as an insult, but there you go. You never know when – or if – you’re going to have to speak up. So don’t be shy. If someone says it, tell them.