As I might have mentioned in the previous post, Simon wants to go to ESY (Extended School Year for those not in the know).
He really wants to go to ESY.
He really, really wants to go to ESY.
For the most part, he’s calmed down. But he checks the calendar and asks about it every day.
And he likes me to write about it.
Normally when he asks me to write things down, we wind up filling up a page with repeated sentences.
Sometimes they fall into particular patterns, like if he gets anxious about dad not being home. Then we have a rote way of handling it that includes repetition of “Dad is at work. Dad will be home at dinner time. We will wait for Dad. We won’t cry for Dad.” That goes on for as long as it has to until he calms himself down.
This time, though, he wanted me to write something down, and then he told me that “Mom said it.” What I said was that there was no school. I decided to be clever, so I put a word bubble around it, and then drew myself. Poorly.
He liked it, though, and then he said, “Mom, there’s no school.” And he pointed at the page.
I wrote it down, word-bubbled it, and drew him.
As you can see, from there, he had a lot of fun telling me what to write. I had to stop him when the page ran out of space, but by then he had calmed down and was doing okay again.
I may not be the most talented of artists, but I’m good enough to make Simon happy, and since he’s my only audience (other than you fools who are reading this), I think I’ve hit my market.
The gods of special needs kids and parents are capricious.
Yesterday, everything went as smoothly as anyone could expect for the first week of summer vacation. It got a bit rough at the end of the day, but Simon was tired and hungry, and who among us can cast the first stone for being in a bad mood in that situation?
This morning we went out shopping with a friend, and by the time it hit 11, he was getting upset, stamping his foot, whining, and doing everything else he does when he’s unhappy. Luckily, I got him to tell me that he was angry because he was hungry. Again, hangry is a legit thing for any of us. It totally would’ve broken Job, amiright?
We hit an early lunch at Whatburger. (Whataburger, if you read this, send me free coupons because Simon luuuuvs you!)
Simon showed he was hungry: he ate his food, stole fries from my friend, and drank two jugs of OJ. After that, he was calmer, said he was happy, and said he wasn’t hungry.
Things were okay after that.
We went home and chilled out. He watched TV and played with some of his birthday gifts.
Then it was time to go to HEB. For some reason, the grocery store is one of Simon’s favorite places to go. I don’t know if it’s because of the loaves and fishes. Oh wait, we don’t buy fish. Maybe it’s the cheese and bread to make grilled cheese sandwiches?
I don’t know why it is, but he loves it. He’ll wake me up in the morning by asking when we’re going to HEB. (HEB – if you’re reading this, give me some free coupons, too!)
We drove to HEB – he was happy.
We went into HEB – he was happy.
We shopped through most of the store – he was happy.
We walked into the produce area and ran into…his teacher from this past year.
The happy was gone.
Simon saw her, he touched her arm, she said hi to him.
It was all over.
He immediately began to talk about ESY (Extended School Year – like summer school for kids with disabilities) and school. His entire focus shifted to it. After fighting his obsession all weekend, he gave into it.
I tried to pay for out groceries and get us out of the store as quickly as possible, but he melted down at the register. I used all my tricks for calming him down, and none of them worked.
It was a very, very unsuccessful shopping trip.
So, I pray, dear capricious special needs gods, keep teachers and other school personnel away from us as we shop. (And don’t take it personally, but I think we’ll start driving out of town to a Kroger’s instead.)
At 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.
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.
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.
Not too long ago, we decided to start getting regular babysitting, and we picked my father’s step-granddaughter.
She had seemed nice and responsible when we’d met her, but I figured I’d try 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 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…
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.