On Autumn Leaves, Daisies (the Organized Kind), Toddler Escapees and Misbehavin' (Charts)

1. I forgot how much fun leaves are.







They are great for burying, throwing, piling onto toy dump trucks...really the possibilities are endless. We broke down and hired the yard crew to help out this year but they didn't come until this week, while everyone was at school and work (and obviously, after these pictures were taken). As well intentioned as I am, neither Erin or I have the time. I tried to rake a little on Saturday while the kids were playing outside and, well, if that's not the definition of a Sisyphean task, then I don't know what is. Someday, we'll have quite the little built-in work crew, but that day is not today.


Leo might enjoy the leaves most of all.

2. Ellie joined Girl Scouts. Well, Daisies. No pictures yet but I'm currently on a mission to purchase the  requisite vest (see above). The store where it can be purchased is only open for three hours two Saturdays a month. I know! I am pretty sure if I do make it to that store I will also need to know the secret handshake. She had her first meeting last Friday and I had to got to leave work early to attend the first parent meeting. There was a lot of squealing and giggling going on at her meeting, which I peeked in on, but that's about all I know of Daisies at this point. Also, there will be cookies to sell (and eat) later in the year. A lot of cookies, so that's something to look forward to. (I had to laugh at one mom at the meeting who made a point of saying she could not be a "cookie helper" because she wouldn't be able to trust herself with all those cookies in her house--apparently "cookie helpers" are required to store the ordered cookies).

3. Did I tell you the babies climbed out their cribs? I didn't? Well, The babies climbed out of their cribs. It happened last week during nap time. I was at work and the babysitter called to tell me she found Harry and Lucy sitting outside of their room, smiling and laughing. And apparently, quite pleased with themselves. Yes, the moment every parent fears, finally happened. I guess this should also be the time that I admit that I believe all children should be in cribs until at least age 20.

Mind you, I would be way less concerned about this if we were only talking about one baby, but two babies? Free reign? In a room with just each other? Oh goodness, NO. I am afraid to even talk about this out loud because I fear that our "solution" (threatening the babies that if they don't stay in their cribs they'll have to go to the doctor and get a shot) will stop working. I'm just not mentally ready for toddlers in beds. Just, no.

4. Ellie is suddenly very focused on behavior charts.



It took me a while to realize the guy on Ellie's behavior chart? Is totally flipping us off (Ellie claims it's supposed to be a thumb's up, but I'm not so sure).


There seems to be a ton of talk about behavior in first grade. Several times since school has started, she's told me that she didn't get to do computers or have free time because of bad behavior (not hers, but someone or "someones" in her class). She is frequently adding and subtracting stars to the above chart and even has Harry and Lucy in on the action. "Do you think I should take one of Lucy's stars away?" Ellie asks (The answer is usually, yes-cough, cough-wait, did I just say that?).


Lucy's version of a "thumb's up." And yes, it makes me laugh, every single time.


Columbus' ship, by Leo
Columbus Day, came and went. I don't know about you, but I did not get the day off.

Down syndrome? Or Spoiled? And Because That's Not Enough, Let's Throw in Some Religion Too

Something happened over the weekend that I’m still thinking about.

First of all, about two months ago I started taking the kids to synagogue. I found a fairly friendly (we haven’t been going that long so I don’t feel quite like we belong yet, more on that below)… inclusive temple in a neighboring town. They hold a children’s service every Saturday morning and I’ve alternated taking one kid at a time as many Saturdays as possible (there are way too many doors in that room for me to handle both kids alone). I’m definitely not a religious person but I guess as I get older and with the kids, I can certainly feel myself searching for a return of some kind of faith, some semblance of community. Anyway…

A few things. Leo is, shall we say, “busy” during the children’s services. I wouldn’t characterize this as some formal ceremony where everyone is expected to stay perfectly still and silent. I mean, it’s a children’s service. It’s a bunch of kids (ages toddler to preschool) running around with plush Torahs and scarves and pom poms, singing songs and chanting prayers. You get the idea. But there are definitely moments that are meant to be more “quiet.” Where the majority of the children sit, you know, still, or on people’s laps. Except Leo, who is crawling around on the floor and pretending to be a dog. And then he is taking my purse and opening up all the pockets and unzippering all the zippers. I think he was looking for snacks (which I stupidly forgot). I grabbed my purse back from him as soon as I saw what he was doing. I feel like my description makes him sound completely out of control. But with the snacks, a part of me is like, what's with the constant snacking? Is it really necessary? Have I created snacking monsters? They seem to be hungry all.the.time.

Another side note: I’ve noticed Leo takes to dropping on all fours and barking (basically, pretending to be a dog) when introduced to group situations (birthday parties, children’s service at synagogue) at least initially. I am trying to figure out what this is about.

But back to last Saturday Leo was fascinated by the man with the guitar. He kept trying to touch the guitar, kept crawling towards the guitar case to open it. At one point the man patted him on the head. He was very patient. It made me think about how “convenient” it is that Down syndrome is so obvious, and how hard it must be for parents whose kids don’t act “right” yet have no physical signs of difference. I was doing my best to control Leo but he was really all over the place, to the point where I wondered if he was a distraction to the others. When one of the older kids (probably a four year old, actually) asked why Leo was doing what he was doing, the service leader said "he's just learning."

Regarding the forgotten snacks: Leo kept telling me he was hungry. I held out as long as I could with distractions and attempts at reason (“we’ll have lunch very soon, after the service” I know, I know, meaningless to a 4 ½ year old who developmentally is not even 4 1/2.)

And then, I caved. After the children’s service (and the adult service, which occur simultaneously) the whole congregation meets upstairs for a light lunch (bagels, salad, fruit, cookies). We were about 15-20 minutes away from the lunch and I figured it would be OK to sneak into the lunch room and take a bagel to tide Leo over, so that we could finish up the service and have lunch with the others. I held Leo’s hand and walked into the lunchroom where I spotted a child who had been in the service in the arms of her mother, eating a cookie (a cookie definitely from the lunch table, not a packed snack). When I saw this I figured we were safe, and I moved towards the bagels. I joked to one of the servers about Leo having a bagel “freak out” and would it be OK if we took one? He nodded like he could have cared less.

That’s when Nosey Man approached me and decided he needed to tell me that “We usually wait until after the service to eat.”

Now it’s obvious how I feel about this whole incident based on what I nicknamed the “gentleman” who approached us. Before I had kids I had strong opinions on “giving in” to kids, saying no, setting limits. I still feel that these things are necessary, it’s just a little different now. And with Leo, it’s a lot different. Here’s where I get confused. It’s not that Leo doesn’t understand the concept of no, because I know that he does, but he doesn’t seem to understand the concept of “not now but soon.” Maybe that is a four-year old thing and not a Down syndrome thing (I don’t want to get caught up in the blame it all on the DS). I just think that yes Leo is 4 ½ but not really. I actually don’t think Nosey Man even saw Leo, maybe if he had he would have been more sympathetic, who knows. More on Nosey Man: who was he? Did he chide the woman who gave her daughter the cookie? Was he just the congregation curmudgeon that I should blow off? I am a very sensitive person and I know this is. It’s one of my faults but I think in the grand scheme of faults it’s not a terrible one.

If you’ve read this far, thank you. What I am trying to figure out is behavior. Leo is hard to control and impossible to reason with. After I got him his (hard won) bagel, I just didn’t have it in me to go back to the service. So we left. So we missed lunch and we missed seeing the few people that I have met and started becoming friendly with and who I haven’t seen for over a month because birthday parties and various other events have meant we have not gone to synagogue. And I felt bad and sort of “stewy” in that this yucky thing had happened and I didn’t have anyone to talk to about it and so I felt like I was just stewing about it. I don’t know anyone at the synagogue well enough to feel like I can ask them, but I guess I need to just give it time. And I’m certainly not going to make it such a big thing that we won’t come back, or anything. But really, who yells at someone for eating a bagel at a synagogue? And the irony of this is, Jews love to eat!

But I do wonder about Leo’s behavior, if it’s too much. If he’s maybe not ready for the service. And it also got me thinking about one of the ironies of Down syndrome. On the one hand, I feel that it brings us together, that it draws people to us that we wouldn’t normally meet or interact with, but it also isolates us, in that it can be a deterrent, a put-off (“bad” behavior, inappropriate acting-out) or just such a giant pain-in-the-ass that it's easier to Go Home. The whole eating lunch after the service is great in theory. The adults get to socialize while the kids run around except I can't trust Leo to just "run around." He might bolt from the building and run into the parking lot.

That day at the service, Leo was acting out, acting up, couldn’t “handle it” (or maybe I was the one who couldn’t handle it) and so we left. Again, absolutely not blaming Down syndrome for all of this but I can’t think it’s not a contributing issue.

I have no answers, just questions. And some hurt feelings. And I’m annoyed at myself for being so sensitive yet I know that it’s this sensitivity that also helps me in a lot of other situations. I wish I could tie this one up in a neat blog bow, but I just can’t.

Gah.

Unquestionably Friday

I’ve been so good today. Finally motivated myself to make some long put off calls like scheduling a mammogram (fun!), getting the ball rolling on Leo’s orthotics (wee!) and calling the New Jersey Department of Disabilities to find out if there are ANY other services we are eligible for (Snore, depressing and answer: No).

This weekend the being a grown-up fun doesn’t end as my chore will be to gather up all the information for our taxes to be sent to the accountant. Good thing I can eat Frosted Flakes for breakfast and stay up as late as I want because honestly, this adult thing kind of sucks sometimes.

In Leo morning news, we had another less than stellar a.m. I’ve gotten the kids into a habit where they have snacks in the car on the way to daycare in the morning. Most mornings I think they both suffer from serious cases of l.b.s. (low blood sugar). The kids both eat breakfast that I pack them at daycare and so the precious little sandwich bags of pretzels or Trader Joe’s cheese crackers wonder do us all good. And it all works out fine as long as Leo is happy with the options, but today, nothing pleased him and he became increasingly frustrated with my questions: graham cracker? No! Veggy sticks? No! (followed by foot stomping and then Jello Boy.)

Honestly I think he would do so much better if I had all the time in the world to let him pause and think and decide. I don’t think he does well when barraged with questions and forced to make a quick decision (really, show me a four year old who does). Or maybe he was tired. Or maybe he just didn’t want to go anywhere. Or maybe I am just over thinking this whole thing. In any case I took Ellie out to the car and hoped that Leo would be a better mood when I popped back inside to get him but he was not improved or happier in any way. And even though my back had finally started to feel better this morning, I did what I swore I wouldn’t do which is carry him out to the car. I didn’t feel like I had a choice, considering Ellie was alone in the car out front (driveway, but still I'm not a huge fan of leaving kids in cars unattended).

There were tears in the car, but I was able to distract him by pointing out the clock that he likes to talk about, at an intersection not far from our house. He was fine by the time we reached daycare but then once inside he had some kind of meltdown, he tried to go into the director’s office where he likes to hide under the desk (adorable!). I wasn’t able to catch him in time and so there I was, trying to drag him out from under the desk by his pants (it sounds worse than it was but it still wasn’t good). Honestly this morning I felt defeated and a little embarrassed by the antics. I know it’s not my fault and it’s not really Leo’s fault but I can’t help but wonder, what do people think? I know that I shouldn't care but it's impossible for this not to cross my mind.

I wish that I could have calmly stood there and quietly talked Leo out from under the desk, but I had a bus to catch and a job to get to. Again, I think that Leo needs more of my time. What if I had all day to give just to him? Well than he wouldn’t be at daycare and I wouldn’t be trying to convince him to get in the car to go to daycare only to be standing there trying to fish him out from under a desk. Again, sigh.

After I dropped Ellie in the toddler room with her breakfast, I ducked into Leo’s room to give him some sliced pears to go with his French toast. He was sitting quietly at “his” table (he likes to sit in the corner table and eat by himself--it's not as pathetic as it sounds as he's right next to the other, more crowded table). I sat with him for a moment and he put his head on my chest, his arms wrapped tightly around mine. He sat quietly and just let me rub his back. He is rarely still like this.

This weekend the goal is to be in complete opposition to last weekend, which was fun, (marathon grocery shopping, birthday party, parade, play date) but severely overscheduled. I think we all need a break and some down time.

Count to Ten

I should have known what kind of a morning it was going to be when I took one last (admittedly my first) glance in the mirror before leaving for daycare/work and realized I had MY SKIRT ON INSIDE-OUT.

In the history of mornings, today wasn’t that bad I guess. I just HATE yelling at Leo. And that’s what I did. I think I am pretty patient about 97 percent of the time. I know that he takes his time doing things, I know that when I ask him to turn off the TV or tell him that it’s time to go, he doesn’t do things immediately. He shuffles a little. He pauses at the top of the porch steps to listen to the birdies and the garbage truck roaring by (Dee-dee! Whaz-zat?). And that’s OK. It's actually quite sweet and most of the time, endearing. But when he goes all Jello on me when I’m trying to get him into the car seat and starts to kick me, that is not OK and yes, I raised my voice today. I hate doing it and I need to work on the whole “count to ten” thing. But I didn’t count to ten this morning and I yelled. I can only imagine what the neighbors must think. I chalk most of it up to the fact that I hurt my back again. I have this chronic, stupid injury (college crew + c-sections) that rears it’s burning, aching head every few months. It usually goes away after about a week but for a week I am uncomfortable and I have a short fuse and the last thing I want to do is try to fish a slippery 4 ½ year old from the back of a mini van (where he escapes to if he squirms free of me trying to fasten him into the car seat). And so I yelled.

Then at daycare he wouldn’t go into his room. He crawled into the kitchen like a dog and tried to hide behind the refrigerator. It is getting harder and harder to carry him and when he doesn’t want to do something it’s Jello all the way. It happens less and less but when my back is acting up it’s just intolerable. Do you hear that Leo?

But before I left him for the day we kissed and made up. I brought him his beloved pears and he kissed me and hugged me and he didn’t seem any worse for the wear.

I think I was the one who felt beaten up.

My Little Odd Man

Leo attended the birthday party of one of his classmates on Saturday. It was held here at this funny kind of creepy party space.

They corralled all the kids and parents into a room and presented them with a variety of I guess you would say excotic animals. The guy who was introducing the animals spoke in this really annoying sing-songy kind of cutesy voice. I wanted to tell him to cut it out. I mean he was talking to kids but come on. They don’t need that.


When we first walked in Leo kind of freaked out. He tried to run into a closet and hide. He doesn’t like big crowds right away; it takes him a few minutes to warm up. I think he might have also panicked when he saw so many kids from his class at school. I think maybe he thought he was suddenly on a school field trip or something or I was going to leave him there. Who knows.

So I sat with him. There was one other parent that did this with his also freaked out kid, so I didn’t feel too self-conscious about it. You do what you have to do, right? Also, there were no more grown-up chairs left, so I figured I'd just sit with him and not make a big deal out of it. Besides, I got a front seat to all the animals! (all the other parents were seated in chairs in front of the kids). Within a few minutes Leo had completely calmed down and was really interested in all the animals. He was very gentle with all of them (I can’t say that about all of the kids) and so curious. There wasn’t one that he didn’t want to touch (some of the kids were really afraid, especially of Jacklyn, the squaking 49-year-old parrot).

After the animal presentation there was pizza and cake. Just like at the last party, Leo insisted on sitting on the floor at first, while everyone else crowded together at the long table. I laughed about it with some other parents. Leo is definitely his own person, that’s for sure. It was funny, he was in a room full of kids with Down syndrome and he still has to be the odd man amongst the room full of “odd men.” And just as I predicted, halfway through the pizza he got up on his own accord and sat with his friends. In the past I probably would have fought him and tried to reason with him. I’ve come to learn though that Leo does everything in his own time.

And of course there was cake.


It looks like Leo's friend is talking to him about something. It also looks like Leo is saying don't bother me I'm eating my cake.

This picture cracks me up. They are so serious about their birthday cake eating. It’s like they’re working or something. Must. Eat. Cake.

On the way to the party (it was about a 30 minute drive) Leo and I played a new game. He’s really into pointing things out (clocks, numbers/letters on a sign) and asking me about general things that he sees: “Dee-Dee, Whas Zat?” So we talked about what we saw, and then I started quizzing him on colors (What color is that sign? What color is the truck?). He answered them all correctly. Then I put a spin on things and asked him the colors of things we weren’t looking at, like, “Leo, what color is a cherry? A school bus? Ellie’s hair?” He answered them all correctly, and loved the game. He kept asking me for more. Is this called abstract thought? I don’t know, but it seemed advanced to me. And I just felt like bragging about it.

By the way, I escaped the party without meeting up with any centipedes. The armadillos ate mealy bugs (if you click on the photo you can sort of see them-ew!) which bear a striking resembelance (creepy crawly-wise) to centipedes-I was sitting a mere feet away from them. They were sort of like a car accident--I was repulsed but also couldn't look away.

Birthday Party. Questions.

Saturday I took the kids to a birthday party by myself. The daughter of a friend of mine from the mom’s group I was in when Ellie was a newborn turned one (how is that the babies are turning one?). The party was held at a building within a park, adjacent to a playground. I knew as soon as I saw the playground that we would not be going inside to the party. When Leo sees a play structure it is pretty much over. He loves him a good playground.

I was a little disappointed since I had been alone with the kids all day (Erin had to fly to New Orleans at the last minute for a funeral—don’t even get me started on the sadness that is the death of a 39-year-old mother of three to breast cancer). When I’m alone with the kids all day I usually try to schedule at least one “event,” that is, one thing that the day is centered around. Well this birthday party was the “event” and it was looking like my one chance at a social interaction for the day with someone over the age of three was going to end up being me sitting on a bench watching Leo play, bouncing Ellie on my knee.

Don’t get me wrong--I like watching Leo play. I like watching him try to figure out how to move his body. He is very daring and adventurous but he’s not impractical or unrealistic. He knows his limits and he’s very good about asking for help when he needs it. It’s rare that he gets himself into a situation on a structure that he can’t get out of. He’s big into ladders and rock walls right now which is great, but I don’t really trust him on these by himself. I have to hover a bit, which I think annoys him and I don’t love it either. Now that Ellie is officially way too big for the Bjorn (threw out my back last week and learned that lesson the hard way) taking the two of them to the playground myself is a little challenging. Also, Ellie wants to climb all over the structures herself and she is definitely not practical or realistic about what her little body can do.

I pushed Ellie in the swing and I let her climb a bit but I got tired of trying to keep her from eating sawdust and finally she was getting to heavy to carry around, so I plopped her in the stroller, completely expecting her to start whining and squirming. To my surprise she sat there quite content to watch her brother and I was relieved to be able to take a short break. After a minute or so, a woman came and sat down next to us. She was watching her daughter who looked to be four or five. I asked the woman if she was here for the party and she said she was. After a few minutes of silence she asked me how old Leo was. I told her he was almost four and she nodded and pointed to her a little boy who was a few play structures away.

“So he’s about the same as mine,” she said, nodding in her son’s direction. “He’s three.”

No, I thought to myself. He’s not the same as yours. He’s a year older. I wondered why she would say something like that when at that age, one year is a pretty big difference. Was she just assuming that because Leo has Down syndrome he’s a year behind? (he is, at least, but that’s beside the point). And then I wondered what I also wonder when people ask me Leo’s age. Are they asking because of the Down syndrome? Are they asking because he’s not speaking in comprehensible (to them) words? Do they even notice the DS?

“My son has autism,” she said.

I nodded. That was when I got it. That was when it all changed. Suddenly I didn’t mind that she compared her son to Leo. Not that Leo has autism but I understood that she was seeing that Leo was different but not as someone who didn’t understand difference. Rather as someone who has been there.

She stood up for a moment and started towards her son who was looking like he might need some help on a ladder. But then a man, the boy’s father I assumed, appeared and so she sat back down.

“He loves the playground,” she said. “We won’t be able to get him out of here for a while.”

I nodded. “Yeah, I was hoping to go the party but I don’t think we’ll be going in for a while. My friend doesn’t even know we’re here yet.”

Moments like these depress me. They make me feel isolated. Why can’t Leo just be a regular almost-four-year-old who walks into a party and joins the group, rather than seeing a playground and becoming completely transfixed by it, unable to do anything else but Play. But then I have to remind myself; it’s not necessarily the Down syndrome, stupid. How many typical 3 ½ -year-olds give a hoot about a birthday party? It’s the playground all the way, baby.

“Leo, do you want to go inside and eat some cake?” I called. No response. I was trying to think of a way to get him inside the building because seriously, my friend didn’t even know we’d arrived and since I’d gotten lost getting to the party we were ridiculously late. The party was practically over.

“Mine travels with his own cake,” the woman said, as her little boy toddled in our direction. He was holding an upside down, topless chocolate cupcake which he had smeared all over his cheeks and yellow t-shirt.

Eventually, we did get to go inside. The cake was gone but Leo got a balloon, a shiny pink Mylar one, which he adored (later he would let go of it in the parking lot but for a moment it was his and he loved it). He hugged my friend’s husband at the knees when he gave it to Leo. Friend’s husband called out to the remaining partygoers, “Look at Leo, I gave him a balloon and he hugged me! I love Leo!”

That was a good moment. That’s when I think about how Leo is living up to his reputation as the cute kid with Down syndrome. But what about when we finally had to leave and I had to carry him out kicking and screaming, balancing him on one hip while I pushed Ellie’s stroller with one hand. That was not a good moment. He would. not. walk. He went, as I like to call, "boneless." It’s not fair to Leo to expect him to be the Down syndrome ambassador, always on his best, cute behavior. But I’d be lying if I said I don’t hope that he will be. I go back to my earlier thought, that plenty of typical 3 ½ year olds don’t attend parties gracefully. Why should I expect Leo to? He doesn’t always have to be cute. He doesn’t always have to be giving hugs. But some of the people at the party have never met anyone with Down syndrome, and they may never meet anyone again. Leo will be it. The one. That’s a lot of pressure for a 3-½ year old.

Ear Fluid and Progress Notes

After last week, with Leo’s school calling me not once, but twice, to come pick Mr. Sickly up, I was a little worried about the weekend. He seemed fine though, in spite of the fact that one of his ear tubes is AWOL (there’s another probable surgery looming there). I live in constant fear of ear infections with both kids since, according to the doctor; they have both inherited my freakishly narrow ear canals and therefore are even more predisposed to infection. And poor Leo with the DS and the small canal thing—geesh, the poor guy. I am watching Ellie like a hawk since last week she had fluid that the doctor said could turn infected. OK, enough with the ear fluid! OMG isn’t this riveting?

So, the zoo. It was great to see Leo just able to run around and do his thing. He bounded up the netted ladder like a teenager at boot camp. I was impressed. And each time he went down the slide he went faster and tried more daring poses. Belly First! Belly First with hands forward! It’s great to see him so fearless and independent and keeping up with even some of the big kids. As I mentioned in my earlier post, it was great to see the changes in him in just a few months. I have still not gotten the nerve up to take him to the zoo by myself (with Ellie), but I can see that it’s not far from being a possibility. He listens better, doesn’t wander so much. However transitions are still a struggle. He could have stayed at that playground All Day. And then he could have stayed at the petting zoo the Rest Of The Day. Sometimes distracting him can be an almost two person job. But we’ll get there. And when I get frustrated with him I try to also focus on the positive when I can.