Sometimes I torture my son.
No, not like that!
It’s torture because he’s a teenager, and I’m his mom, and everything I do is automatically uncool and annoying.
The other day, he was wandering through the house, singing, “We can dance. We can dance.”
That same line, over and over and over.
So I chimed in.
“You can dance if we want to. You can leave your friends behind…”
He gave me a look that told me how much I could dance.
“’Cause your friends don’t dance, and if they don’t dance, well they’re no friends of mine.”
“We can dance, we can dance –“
“But it’s the safety dance!” I protested.
My singing – and dancing – were seriously rejected. He abandoned me in the kitchen and went back out into the living room.
I heard him singing, “We can dance,” but it was quieter, almost like he was trying to make sure I didn’t hear him and join in.
I am officially uncool and annoying.
But I can dance if I want to.
As Simon gets older and older, a problem has emerged into more and more of a problem: going to the bathroom in public.
When he was little, it was easy. Women are pretty accepting of kids coming into the women’s room.
When he got bigger, I kept bringing him in. Sure, he was a bit old to be considered a “kid,” but since he was with me, no one seemed to care.
It made me nervous, though. Sooner or later, I was sure, someone would try to get into it with me and tell me that I couldn’t bring him in.
Now he’s clearly a teenager, and not a young teen either. Bringing him into a women’s bathroom is the last resort. Instead, the best option is a family restroom, or a single person restroom, where I can stand outside and keep an ear – and eye – out.
Recently, I’ve gotten brave.
Since I don’t feel good about bringing him into women’s rooms, I’ve begun sending him into men’s rooms.
Then I stand around the entrance, nervous as hell, sometimes calling into the room after him, getting weird looks from the guys who are coming out.
I finally took it further – instead of standing outside the men’s room, waiting for him, calling to him, I would go into the women’s room and go to the bathroom while he was in the men’s room.
I pee as fast as I can, hoping I finish before he does and get out before he does. I wash my hands without drying them. If there is too long a line, I don’t go at all and instead just cross my legs until we get somewhere else or until we get home.
I always make it out before him, even if it means that I use antibacterial gel on my hands instead of washing them.
But then I got super brave.
Brave like someone rushing through traffic to save a toddler from an oncoming car hitting him while a hawk swooped down to try to pull him up and eat him and a hunter fired a gun at the hawk, but the hunter had super bad aim and the bullet was coming in way too low.
Okay, not that brave.
But pretty brave.
We were at a Target, and I really really really had to pee.
Simon didn’t have to go, and I knew that he’d been willing to go into the men’s bathroom and pee anyway, but then we’d leave the cart with all the paid-for groceries all alone, and I didn’t really want to do that. And Simon is 16. Maybe it was time to try something new.
“Hey, Simon,” I said, “can you do me a favor?”
“I want you to hold onto the handle of this cart, here,” I showed him where to put his hands, “and I’m going to go into the bathroom. I’ll be right out. You wait here, holding the cart. Is that okay?”
Here’s the thing: Simon saying yes doesn’t always mean yes. He says yes to almost as many things as he says no to, and the response often has nothing to do with the question as much as it does about the time of day, how tired he is, or how much attention he’s been paying. Or it might have something to do with what sounds best. I have no idea how he decides whether or not he says yes or no.
But he said yes.
And I had to pee.
He put his hands on the cart, standing where he couldn’t see into the women’s room, but as close as I could get him without having him look in.
The fear. The absolute fear. The oh my god, I am leaving him alone in a store fear.
Will he wander off?
Will he get upset?
Will a well-meaning person try to help him if he gets upset, leading to a police incident in the 90 seconds that it takes me to pee?
(Yes, those are all serious fears – while I don’t think a police officer could make it there that quickly, the fear that an officer could show up and there could be an incident that would lead to an injury or an arrest is completely legitimate.)
I rushed. I rushed so much. I avoided peeing on the seat (which proves that, no, you don’t have to pee on the seat you seat-peeing savages), and I washed my hands, drying them on my shirt because I wasn’t going to use the hot air blower.
I left the bathroom, fully expecting a partial meltdown in progress.
Simon is not a fan of not being able to see people that he wants to see.
At home, I can tell him half a dozen times that I’m bringing recycling out to the bin, and when I come back in, he’s crying and repeating that “Mom is taking out recycling” or if I go out for the mail, then I hear “Mom’s getting the mail.”
Whatever it is, he isn’t very happy about it.
Even going to the mall as a family, when Patrick takes Simon to the bathroom, if I take longer than them, I hear about it as I make it back to the waiting place. “Mom is in the bathroom! Mom is in the bathroom!”
This time, though, he was just standing there, still hanging onto the cart.
He wasn’t trying to look into the bathroom. He hadn’t left the cart. He wasn’t upset that I had gone into the bathroom.
He was…he was…he was fine!
Now, I know that this sounds like all I’m talking about is going to the bathroom, but it’s so much more than that.
He’s 16. He’s going into his sophomore year in high school, but he is eligible for (and will be taking part in) the 18+ program. He will stay in school, getting some extra help, socialization, job training, and lots of other good stuff until he’s 21.
Five years might sound like a long time, but anyone with a child can tell you that it’s not. It’s the blink of an eye.
At 16, Simon needs to be moving ahead with his life.
He needs to be able to do things on his own.
He needs to be able to let me do things on my own.
He needs to not always need someone to watch him.
He needs to be his own person.
He needs to be an adult.
So while standing alone with a shopping cart while I duck into a bathroom for two and a half minutes doesn’t sound like a lot, it’s the start of a lot.
I’m down with Dear Abby. I know it’s not her, or her sister. Maybe at this point it’s not even her daughter. It might have moved on to a distant cousin that the family only sees at big family reunions and only recognizes because she’s wearing the assigned t-shirt.
Regardless of who’s writing it, however, I was sad to read the letter, and response, that went up on July 15.
The letter reads:
“DEAR ABBY: We have three grandchildren and are due to make our annual visit. Two of the children are easy to plan for, and we have good relationships with them. The third is a 12-year-old boy with Down syndrome, and we struggle with how to deal with him — what to do and what to buy him. Any ideas? — UNSURE IN THE SOUTH”
Part of the response includes:
“The most important thing you can bring with you on your visit is a heart filled with love, and the determination that your grandson will know you love him. Spending one-on-one time together would make him feel special. Every child needs validation and affection on their journey toward adulthood. With the self-confidence it brings, Down syndrome children can live full and happy lives.”
No. No. No. No. No. No….
There are far bigger issues at stake here.
Why *don’t* you have a good relationship with him?
Why do you struggle with figuring out “how to deal with him”?
Yes, it’s all well and keen and good to bring him “a heart filled with love,” but he’s twelve years old. Where has that heart been for the past twelve years? Where has the relationship been with him for those twelve years? Why is this just a question now? And why would you ask Dear Abby instead of his parents? Or him?
I’m really, really hoping this is a ham-fisted fake letter (not that I suspect that people on staff write the letters at time because that would be dishonest, and it would never happen), but why make it out as if this boy is so different?
“Down syndrome children can live full and happy lives.”
Wow. Really, whoever it is who writes for Abby nowadays? They can?
Knock me over with a feather and tell me it’s a tornado. People with disabilities can actually have full and happy lives? This should not be shocking news to the grandparents, and if it is, then I’m even sadder and angrier for the twelve year old.
I talked to some other parents about this particular letter, and they actually felt that it was moving and touching.
Me? Not so much.
This feels like grandparents who haven’t cared for twelve years – who have been more than happy to be involved in the “easy” kids, but who have not even tried to make a connection with a grandson simply because he is not like the others.
How would you feel as a twelve year old if your grandparents didn’t give you the same time and attention as your siblings?
How would you feel if they couldn’t be bothered to figure out what you liked because it was “difficult”?
They may be trying to make up for it now, but as someone who has absent grandparents for her own son, grandparents that seem to be (and have been) involved with all their other grandchildren and great-grandchildren, this letter is a stark reminder that some family members abandon those with any form of disability or difference that makes them uncomfortable.
If you find this inspiring, I’m very happy for you because it probably means that you haven’t seen this behavior within your own family.
As for me, I find it painful and heartbreaking to think that these “family” members have not been treating one child like the others. I find it a reminder of the pictures I see posted online of family time that doesn’t involve my family. I find it a reminder of all the times we have not been invited to gatherings because “Simon might not be able to deal with the noise.” I find it a reminder of all the times that family members refused to even try to babysit, claiming it was too difficult to even be left alone with Simon while he was asleep.
At this point, we’ve had to give up because getting up our hopes that Simon would be included and accommodated have been dashed so many times that it’s just unhealthy and unrealistic to keep hoping.
So I hope that the grandparents in the letter do something, that they do try, that they do succeed, and that this boy is no longer left out. But after twelve years, I worry that this boy is in the same place that Simon is in.
Simon started getting a mustache when he was 12. It was cool, though, because the school district allows mustaches from junior high on. (I’m not sure why.)
Now he’s 15, and he’s starting to get a lot of chin whiskers. It isn’t cool, though, because the school district does not allow beards. (I’m not sure why of this either…)
He seems to be quite fond of his beard, though, because whenever we ask him about shaving it off, no matter how we phrase it, no matter how we introduce the idea, his response is always the same.
Apparently it’s not just his chin hair that’s started the no-ing in his life. It’s also the cafeteria food.
Simon is a grilled cheese connoisseur, and the school cafeteria does not meet his exacting standards when it comes to the proper presentation of grilled cheese.
Top: Unacceptable. Simon will say no and refuse to take it because there is cheese on top of the bread.
Bottom: Acceptable. The cheese is in its proper configuration and does not cross the plane of the bread.
At home – and restaurants – this doesn’t be a problem, mostly likely (we’re guessing) because there’s not a choice involved. At home, he helps make it himself, and at the restaurant, it’s served to him. No choice to reject it and get a different plate from the line.
Hopefully, going with the flow when there aren’t other options a good sign.
Hopefully, that means that if we present him with a razor (without an option), he’ll decide that there’s no choice there, either.
Hopefully, if that doesn’t work, his high school will be understanding.
And hopefully, if they aren’t, it will be easy enough to create our own religion that requires members to grow beards and eat properly made grilled cheese sandwiches.
Simon came home from school happy about school, which is his normal status about school.
School is an amazing place, or at least he thinks that while he’s at home. (While he’s at school, it’s often a different matter and he can get mad at things not happening on schedule or teachers not being there.)
But today, it was happiness.
From the moment he got off the bus, he said school was fun.
I asked what he did at school. “Fun,” he said.
I asked again, emphasis on “what” he did…
“What did you learn about?”
Okay, maybe that’s actually a “where” response, but close enough that I’ll take it.
These feelings about school didn’t fade away. He ran through his usual “script” about going to school and when he goes back to school (tomorrow morning).
But that wasn’t enough today. He kept repeating himself and wanting me to repeat it back to him.
So I came up with a social story on the fly and told it to him.
“In the morning, you wake up, then you get dressed, then you eat breakfast, then you get on the bus, and then you get to school.” I held up a finger for each step, numbering them one through five.
He nodded along, so I went for the repetition.
“What do you do first?” [One finger held up]
“Then what?” [Two fingers held up]
“And then?” [Three fingers held up]
“And next?” [Four fingers held up]
“Take the bus.”
“And what’s the last step?” [All five fingers held up]
“Get to school.”
“Do you feel better now?”
“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.”
Driving Simon home from his doctor’s appointment earlier today…
Me, watching him blink slowly, his eyes closing: Are you tired?
Simon, in typical teenager must deny everything mode: No.
Me: I think you’re tired.
Simon, head slowly tilting back towards the headrest, eyes continuing to blink slowly.
Me: Are you falling asleep?
Simon, rallying quickly: No.
Two minutes later, I grabbed a picture at a red light…
According to Disability Scoop, now that Cat & Jack’s accessible clothing line for kids has become popular enough at Target, they’ve decided to expand their line to include adults. To be specific, women. Not men.
This is a problem for us, and most especially for Simon.
Simon is 15. He wears men’s sizes. He needs accessible clothing.
His needs aren’t great. He needs jeans with elastic waistbands, and he needs t-shirts without heavy graphics on them.
The t-shirts we can find.
The jeans? Not happening.
Yes, Tommy Hilfiger has their line of accessible clothing for adults, but, let’s be honest, they aren’t exactly in the same price range as Target, and they are also hard to shop.
Before writing this, I tried to check out the Tommy Hilfiger website for their accessible adult lines. There is a link on the side, but no matter how many times I clicked on links, and no matter how many links I clicked on, I couldn’t find it, so I can’t even provide a price range.
Here’s the thing about the jeans, though – there is nowhere that I can find cool men’s jeans that have an elastic waistband.
Yes, I can buy them online, but the only ones I can find in men’s sizes are geared towards men in nursing homes, and they tend to be less jeans and more khakis. They also tend to be about $50 a pair.
Yes, there are other types of pants that have elastic waistbands. There are sweatpants, there are joggers, and there are those khakis. He can’t wear sweatpants to school, though, and khakis are not 15-year-old friendly. Joggers aren’t bad, but they have the elastic around the ankles, which does not seem to be Simon’s favorite thing.
Now here’s the other things about jeans – women have an entire line of “mom pants” that can be found at almost every department store. They have elastic waistbands. They are comfortable. But they’re styled for women, and they’re designed for a woman’s body. They aren’t styled or designed for a 15 year old boy.
I don’t know why it’s so hard for companies to understand that men with disabilities have the same needs as kids and women. Do they think that men don’t want to look good? Do they believe that men don’t care how they look? Do they not realize that the market is there?
I’m really hoping to see Target branch out as soon as possible, or maybe see another affordable company hit the market. And I really hope it’s soon because it would be nice for Simon to have good, comfortable jeans before he’s out of high school.
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.