A Enigma and a Nod to Emerson

Every since I returned from Portland, Leo has been in a mood.

I hate to generalize, but I think in this case, it’s fair.

Leo has been angry, aggressive and impulsive. And did I mention angry?

I wish I could capture his scowl. His furrowed brow, his tiny pursed lips. His expression is so clenched, so exaggerated and dripping with fury, it looks painful.

I know it’s painful for me.

Two nights in a row Leo refused to come to the dinner table, even for his beloved eggs. Last night he sat at the bottom of the steps in the entry way and literally wailed. It’s hard to ignore and just go along like everything is fine with this sort of behavior. It’s hard not to let it get to you.

He’s been complaining about things being “too loud,” so much so that I actually took him to the pediatrician on Monday to see if he had an ear infection (he’d been literally holding his ears). I actually really hoped he had an ear infection. Wouldn’t it be nice to have a little miracle cure? Nope. He checked out just fine.

With any other child (say, one with 46 chromosomes), I would chalk this up to a phase. But with Leo, my mind goes in all sorts of directions. And Dr. Google doesn’t help.

I know that by nature I'm a worrier. And when it comes to the kids, when things are particularly hard, I tend to think They Are Always Going to Be This Way. I think back to early newborn days when Ellie was waking every hour. It didn't seem possible that would ever change, but of course it did.

Eventually last night, Leo did come around. He joined Erin at the table and gulped down pasta while Ellie and I went upstairs to do bath and books. He’s seemed happier lately when things are one-on-one which is fine when it’s possible, but newsflash to Leo: You’re not an only child. We have no plans to get rid of Ellie any time soon.

I emailed Leo’s teacher on Tuesday to find out if she’d been seeing any of the troubling behavior we’d seen and she said Leo had been completely agreeable.

Then I received this email yesterday: “Leo is having a difficult day today. At times he is refusing to do his work or listen to directions. I guess this is what you had written me about before. He eventually comes around but today it's taking him a longer time.”

Not what I wanted to hear. Like most kids, Leo’s always been a Different Person at school and has almost always saved his challenging behavior for lucky us at home. Obviously this is not fun for us but it’s certainly preferable to him being a turkey at home and at school.

But.

This morning he came downstairs without much haggling. He ate his breakfast in a timely manner. He didn’t assault me when I tried to help him get dressed. And best of all, he bolted out the door calling, “My bus!” upon seeing his morning ride to school. He practically skipped toward the bus and boarded it without protest or attitude.

So maybe today is a new day? Maybe it is just a phase. Or maybe it’s as a few people have suggested, that Leo is actually angry with me for going away for almost a week. He didn’t get to go see grandpa and grandpa like Ellie did. He didn’t get to go on the airplane. Is he just ticked off?

So today I am celebrating a good morning. I am hoping for the best and taking it one day at a time (any other good cliches I can spout?).

But seriously, here's something that feels particularly apropos. I really do love this one:

“Finish each day and be done with it. You have done what you could. Some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.”
--Ralph Waldo Emerson

Monday, Leo’s teacher sent this picture home in his backpack.

He was Student of the Month at his school. And why was he recognized?

For gratefulness.

Oh Leo, you are my little mystery.

Frustrated

I never wanted to be a stay at home mom. I love my job. But it is getting harder and harder to leave Ellie. She is just so much fun (OK not all the time, but you know what I mean). And she is changing so quickly. This morning on the phone she said “hi” to Erin. I had to ask her to do it, but still. She is still doing a lot of whining and grunting for her needs and wants but she is also beginning to be able to communicate as well. Yesterday morning I swear she walked into the kitchen, stood by the refrigerator and plain as day, said “Eat” (or as she says, “Eee.”) One of the ladies at daycare said she asked Ellie “are you pretty?” and Ellie nodded yes. I think she gets that you are asking a question from the inflection in your voice.

When I'm at work, I often feel guilty, that I should be home with her and witnessing her every milestone. Helping to be a positive influence on her personality and temperament. Instilling her with all my vast knowledge (ha) rather than paying someone else half my paycheck to do so.

And yesterday when I was at daycare I saw Ellie push another baby. They were standing at the baby gate waiting for food and she just reached out and pushed this little girl. Now I’ve seen this girl push other kids (including Ellie) a lot. She’s pretty aggressive, so she probably had it coming to her. But it made me think about studies I’ve read about kids in daycare being more likely to hit, to pick up on bad behaviors. Ugh. Leo started in daycare when he was 17 months old and from what I can tell, it never had anything but a positive affect on him. But maybe Ellie will be different. She’s such a sweetheart now. I don’t want her hitting. Another ugh.

I know staying home is not all sunshine and smiles and long naps and days filled with enrichment and education. Staying home is the hardest job there is, in my opinion. Frankly I don’t think I have the mental health for it. I do so much better out in the world. I know you can’t have it all, that staying home has its advantages as does working (I won’t even go into the fact that staying home is not a financially viable option for our family anyway).

And of course I have guilt about Leo. I don’t worry about him at all when he’s at his preschool, the “special” school where it’s 95 percent kids with Down syndrome (and 5 percent something with some other cognitive issue). The daycare is great but I know they let Leo get away with things (even though I have told them repeatedly not to and to treat him like all the others). I know it’s important that he gets free play time there (which every four-year-old needs) but I worry that he just gets lost there, left to do his own thing (which very often may be playing with something inappropriately or just doing something he shouldn’t be doing). Yesterday the school had a Tae Kwon Do instructor come in to teach a class to the preschool kids. I had to sign a permission slip and pay $12 and I knew going into it that Leo was probably not going to participate like the other kids. And sure enough, when I spoke to his teacher this morning, she confirmed my suspicions:

“He did a couple of kicks but mostly he just ran around. He had a lot of fun though.”

Fabulous! Maybe I need to lighten up a bit but I guess I just wasn’t thrilled that Leo was allowed to run around while the rest of his peers participated in an organized activity. Who knows what really happened. I wasn’t there and maybe it wasn’t as bad as it sounded. I know I can’t be there every second and even if I was, who is to say I would do a better job? What do I know? When we’re home it’s not exactly all education all the time. I feel like I spend half my time yelling at Leo to stop pushing his sister down.

But I’m still frustrated. But I guess, who isn't?

Edited to add that I'm about to spend nine straight days with my kids, including two cross country flights as we embark on our annual trip to Oregon to see the family. I'm sure I'll be posting here in about nine days about how great it is to be back at work! Life is funny.

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.