Life, Autism, Disability, and More

Tag Archives: autism

World's Best Mother StatueAt the thrift store, I spotted it.

One of those little statuettes from the 1970s. I remember having them in the house when I was a kid, up on the shelves with knickknacks and tchotchkes.

But this one. This one was for me:
World’s Best Mother.

I brought it up to the register to buy it, and the woman in line behind me saw it. Well, part of it.

“What does that say?” She asked.

“World’s Best Mother.” I picked it up off the counter and showed it to her.

And I bought it.

For myself.

 

I don’t know about your house, but in our house, summer is rough. Simon *loves* school.

He loves the people. He loves the routine. He loves the activities.

Starting yesterday (Memorial Day), he began to focus on ESY (Extended School Year for y’all not in the know…it’s like summer school, but for kids with special needs who need extra help over the summer).

He spent the whole Monday talking about ESY, asking about it, telling us when it was.

Unfortunately, ESY is only four weeks long. Two weeks in June. Two weeks in July. Four days each of those weeks. Three hours each of those days.

Math.
4 x 4 x 3 = 36 hours.

Over nine weeks.

I’m going into the summer prepared and hopeful.

The World’s Best Mother award is part of those preparations.

Like most mothers – especially those of us mothers with special needs kids – there are more days when we feel like the worst mothers instead of the best mothers.

But we shouldn’t.

Even on those worst mother days, we’re still pretty good. As long as our kids are still alive, we’re still alive, and no one is going to jail, it’s a good day.

We’re the World’s Best Mothers.

Download Me:
Worlds Best Mother Award

 


horsebackNot 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?”

“Um.”

Pause.

Serious pause.

Pregnant pause.

Too long a pause.

“Simon’s very special.”

Very special.

Wow.

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.


CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=67932 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…)


simon at goodwillOkay, maybe it’s not a true sickness. But it’s one that I caught in my childhood, Patrick caught in his childhood, too. Now it’s Simon’s turn.

The sickness?

Book addiction.

I’ve been waiting for this day. I’ve been hoping for this day. I’ve been praying for this day.

And it’s finally come.

Simon has had favorite books before. Every night, he wants to read Goodnight, Moon. By now, everyone has that memorized. (In the great green room…)

We’ve been going to the library at least once a week, and he loves it, but he always tended to get the same books over and over. Board book, specifically. Simple ones, intended for toddlers.

I was fine with that. At least he had an interest in books. But there wasn’t much to them. A word or two a page with a picture.

Then it was summer, and we were bored. We started to go to thrift stores on a semi-regular basis.

He began getting books there. $1.00 here. $.50 there. His collection began to grow.

And then…

And then…we went to a thrift store, and he began getting cranky with me. I asked him what he wanted – normally that’s answered with the response of “a big hug!” – but that time he said, “books.”

We went over to the kid’s book area.

I searched the shelves, but I couldn’t find anything that he wanted. Then he reached in, almost randomly it seemed, and he pulled out an “Early Reader” Blue’s Clues book.

What.

The…

I had totally missed it, but he found it. I guess we don’t need to worry about him getting glasses anytime soon.

The minute he pulled it out, he opened it and began reading it. He read it all the way through. When I asked him if he wanted it, he said, “Yes.” Another irregular response – most of the time, he says “no” when asked if he wants things.

We went and bought it, and as soon as we got into the car, he said, “You can have your book when we get home.”

“Do you want it now?”

“Yes.”

I passed it into the backseat, and he immediately began reading it again.

The torch has been passed. We have a reader on our hands.


bowlingIt’s the only logical explanation for the way the last two Mondays have rolled.

Two weeks ago, we tried bowling for the first time all summer.

It was a roaring success! Sort of. The person I’d hoped to meet up with there couldn’t make it. That’s cool. I hadn’t let her know in advance, so it was my bad.

Simon had an awesome time bowling, didn’t want to stop until we’d managed all three of our games that had been included with our summer pass, and didn’t need juice or cookies to help him make it through. Awesomeness.

But.

When we went to get ready and leave, it turned out that his handy dandy notebook, something that he can’t live without, had gone missing. Where, I don’t know. When, I don’t know. All I knew (and he knew) was that it had vanished.

My plans of hitting Starbucks and a thrift store on the way home also vanished. I knew we wouldn’t be able to do anything until we got a new notebook, which was sitting in the closet at home.

Cue a hurried drive home. Grabbing the notebook. Much rejoicing!

One week ago, we tried it for the second time.

I knew in advance that the person I’d wanted to see there wouldn’t make it, but that was okay – two other people (that I’d never met before) and their kids would be there. Massive panic attack. New people! New people! Alert! Alert! I almost didn’t go, but then I pushed through. It would be okay. Simon wanted to go, and I couldn’t let my anxiety get in the way of that. Right?

We went. The new people were cool. Simon had a great time, even if he did start getting distracted a bit during the second and third game. Anytime I asked him if he wanted to leave or keep bowling, though, he went and got a ball and bowled. Nice.

The weather was a bit crazy. It had just been raining when we got there, but about mid-way through our time, the guy on the PA system announced something about tornadoes and power going out and having to go to the bathroom to hide. Not that that bothered my anxiety. Nope. Not at all. Okay, let’s be honest. It powered the shit outta my anxiety. I soldiered on.

When we went to get ready and leave, no problems. Said good-bye. Swapped shoes. Went outside to find out that it had turned into a gentle drizzle. All good. Whew.

But.

This time, we made it all the way to the car before the curse reared its ugly head. I started the car, settled in, heard the ding. It’s been dinging for weeks now, telling me to get it an oil change. I tell it to shut up. This time it wasn’t only telling me to get an oil change. This time, a new light came on. The light that tells me that one of the tires was low.

Did that mean I had a flat? I hadn’t noticed it when I got in. I drove out of the parking lot slowly. Didn’t notice anything. I knew there was a tire with low air, though, and I knew that if it was low enough for the car to notice, it needed to be fixed.

I went into the first gas station I saw that had a sign for air. It wanted $1.50 in quarters. Quarters that I didn’t have.

I went into the second gas station I saw that had a sign for air. It also wanted $1.50, but it took credit cards. Hallelujah! I got out, swiped my car, and waited for the air to turn on. I wanted a really long time before I realized that the air wasn’t working.

Again, I’d been hoping to stop off at Starbucks. This time, I stopped. What was the worst that would happen? I’d blow a tire in the drive thru and block everyone? I could live with that. I needed that coffee.

I drove home slowly, annoying other drivers around me. We made it home safe, and I figured we’d put some air in the tire later. (Which turned out to be another long story involving a missing tire gauge and unsuccessfully guessing which tire needed air and how much.)

Now it’s almost time for bowling again.

I’m planning on going.

Let’s hope that curse is finished with us.


pool

No, this isn’t the same pool. But isn’t it pretty??

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.

Whoops.

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…

 

simon at fountain


quiet loudYesterday 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.

 


24889346 planning puzzle showing intention and goals

Seriously, no one mentioned (and I never thought) to begin planning for Simon’s post-secondary life when he was three. I mean, I know there are those parents – and we were almost those parents – who begin saving for college the minute their kid is born, but how can you know what your child will be like when they’re an adult?

I have nothing against saving money for a potential future, but to begin planning for your child’s potential career or adulthood when they’re three?

Does anyone know what they’ll be when they’re three?

Can you really know what someone will be like when they’re 18 or 21 when they’re only three years old?

My answer is no. When I was three, I think I was most interested in doing things like squishing slugs (yes, that’s for real – my parents tried to expose me to the glory that was nature by pointing out a slug, and my immediate response was to gasp and squish the heck outta it under my thick-soled shoe), playing on the swings, and eating yogurt (because as a three-year-old I was convinced yogurt was where it was at, and my parents had to lie to me to get me to eat ice cream).

I think my examples are a pretty good reason why it’s not good to begin planning for a three-year old. If my parents had planned my life based on that, I would have been a hippie exterminator with a giant swing set in my back yard. As it turns out, only one of those things is true. I’ll let you figure it out.

Anyway, I still feel guilty about it, but I also feel like maybe that’s a bit too soon. Should I have started looking at his future before now? Maybe. But we still don’t know where he’ll be in one year, much less five years. Since he’s not following a “normal” path, why guess? Why assume?

I’m not saying it’s bad to dream or to hope for the best, but why always plan for the absolute worst? Not to be picky, but you might have a neurotypical child, something might go wrong, and suddenly you’re in the position or picking a care home for them when they’re 14 or 18. If parents of neurotypical children don’t assume their kids will need care for life, why should we assume that? Our children have the same chances, hopes, and dreams…why not figure out how to work with them instead?


dentist selfie

Dentist Selfie!

You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.

You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.

On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.

You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.

The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.

Shit.

Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.

He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?

Miraculously, it works.

He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.

You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.

You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.

The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.

Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.

You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.

The chair is not happening.

Nope. Not the chair.

Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.

Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.

So you leave, and you begin worrying about his next dentist appointment.