This month we took Wes to the annual Christmas activity for families of kids with special needs in our county. There are a lot of kids with Down syndrome around here.

I remember first attending this event when Wesley was just three months old. We were adjusted to the fact that our son has Down syndrome by then, but I wasn’t ready to consider what Wes would be like when he’s older. It was hard for me to hold my tiny infant son in my arms and look around at the older kids and young adults with DS and see my son becoming them. It was scary to me. A little uncomfortable. I couldn’t process it yet.

Now Wes is three. This year when we attended the party, where there were more kids with Down syndrome in the same room than I’ve ever seen before, I was relieved to realize that I wasn’t uncomfortable or scared anymore. I guess some things take a little time.

Here’s Wes through the years with Santa at the party.

Dec. 2007: 3 months old
Not aware and doesn’t care.

Dec. 2008: 1 year old
A little more aware and willing to care.

We missed the 2009 party.

Dec. 2010: 3 years old
Well aware and doesn’t care.

But he liked the coloring table and spent about 30 minutes there.

This past week turned out kinda differently than I had planned.

Wes was sick over the weekend. He woke up several times Saturday night, I think because he was dry heaving. He slept pretty much all day Sunday. Occasionally I’d pull him out of bed when he was awake to see if he wanted to watch Barney or Signing Time, but he’d fall asleep again after a few minutes. He threw up a few times after I tried to give him something to drink. On Monday he was better, playing and acting a lot more normally, even eating pretzels and drinking diluted milk.

Both kids had a doctor’s appointment on Monday. It was Carissa’s two-month checkup and Wesley’s three-year one. I knew it’d be a little tiring for me, keeping a handle on Wes and keeping him from touching things he shouldn’t at a doctor’s office while keeping Carissa content. Carissa was scheduled for immunizations, but the surprise was that Wes needed a booster shot, and we decided to give him a flu shot too.

I managed to get both kids through their various weighings and measurings, pokings and proddings, and both came away appearing healthy and growing. Carissa is already 9 lbs 10 oz and 22 inches long, up from 7 lbs 9 oz and 19.5 inches at birth. That’s 23rd percentile for weight and 38th for length. Wes is 27 lbs and 34.5 inches. On the “typical kid” chart, that’s 11th percentile for weight and 2nd for height. It would be a higher percentile on the DS chart.

When it came time for shots I opted for Wes to get his first so he could calm down a little before Carissa got hers. Good decision. He cried, of course, but he got over it once he saw that Carissa was getting something done to her. He was more concerned about her than him and quickly forgot his own little pokes. Carissa, I have to say, did not handle the shots especially gracefully. I don’t remember Wes as a baby crying quite as much or as long as she did. It took a while for her to calm down. But at least both kids weren’t crying at once.

Wes was fussy and cranky the rest of the day, probably because he wasn’t feeling all that great. I had planned to go to a Zumba class that night once he was in bed. I needed the exercise and sometimes it’s nice to do something just for me. Frankly, I was a little tired of cleaning up throw up. Even the cat had thrown up. I settled Wes in bed a little after 8 and about three minutes after I left him I heard him crying. I went to check on him and he had thrown up. Everywhere. I changed his clothes, changed his sheets. Cleaned the carpet. Cleaned the mattress and crib rails. Started laundry. Got him settled again and by then it was close to 10 p.m. Time for bed.

Tuesday he was even better. However, a couple hours before I had to leave to teach my first Zumba class I started feeling not-so-great. But I went and taught my class anyway. I took a bottle of Sprite for my tummy. Class was actually pretty good, but the further into it the more sick I got. By the end I was not doing so great. Afterward I sat a few minutes to gather my strength and a couple of my students kindly offered to help me out to my car. I had one more class to teach, but I was able to find a sub on short notice, which I was grateful for.

I went home feeling miserable and crashed. I think I was pretty dehydrated. After several hours of sipping water and sleeping I started to feel better. The next day was better.

On Thursday I was going to send Wes back to school (we kept him home on Tuesday as he recovered). I was excited because usually I use that time he’s at school for getting things done related to work, but since I had a sub lined up for my class that night, I could use those hours for something purely fun or me-oriented. And Wes was so excited, sitting out on the front porch with his denim jacket and backpack and lunchbox all packed, waiting for the bus. And it didn’t come. And didn’t come. And didn’t come. The bus has been late before, but after a while I finally put 2 and 2 together and realized that’s Fall Break and there is no school.

So Plan B was to take Wes and Carissa for a ride in the car to Walmart so he could still go somewhere and I could get some errands accomplished. It wasn’t exactly fun or me-oriented, but it was productive. We go and get everything on the list, the kids are both being good, and we finish up with just enough time to get Wes home in time for his nap. Perfect.

Then I’m standing in line with all our items on the conveyor belt when I fish through my purse and realize my wallet’s at home. Dang it.

So I apologize to the clerk and tell her I’ll be back soon, take both kids back to the car, drive home, get the wallet, and drive back to Walmart. By this time Wes is dead asleep. I pull him from the car and into the cart, but he can’t stay awake. He keeps nodding off and wanting to lay his head on the front handle. I was so worried the Walmart cashier would be all snotty with me for forgetting my wallet, but I was relieved to find she was a nice cashier! She had set aside all my bags and simply scanned the receipt so I could pay for it. Then she looked at Wes and said she has a friend with Down syndrome, and she thinks her friend is more normal than not. Which I agreed with. And then she said, “I think he may give you a run for your money.” Which I also agreed with.

So that’s the week so far. A few more days to go.

PICNIC

A couple weeks ago Wes and I spent the morning at my sister’s house and we had a gourmet picnic lunch in the backyard.

My sister made us PB&J (and a special microwave toasted cheese sandwich for Wes) with diced peaches and string cheese. The wet marks on Wesley’s shorts are from the peaches he was eating.

Wes likes to get a reaction from animals by waving things in front of them. He does this a lot with our cats at home. It makes him giggle. Here he is trying to get a rise out of Casper the Horse, but I think Casper assumes Wes is giving him a snack.

We had a fun picnic, and afterward Wes fell asleep in the car about two minutes after he was buckled in.

CARPET and TILE SHOPPING

We’ve been shopping around for carpet and tile for our basement. Wes is a big help (NOT), so sometimes the majority of my time browsing is actually spent keeping Wes out of trouble. At one store they had a room full of sample books that kept him happy.

And a toy car he was semi-interested in.

We haven’t decided on carpet yet, but we picked out some great Italian porcelain tile that’s on closeout and a terrific deal. We also think we’ve found some slate for the kitchen and fireplace. On Monday the tiling starts!

CANDY CANDY CANDY

Wes doesn’t like a lot of candy, but he likes M&M’s. It’s the only candy he’ll ask for. The other day he saw the bag of M&M’s out and asked for some by making a sound and trying to sign something. I realized I didn’t know the sign for “candy,” so I looked it up and taught it to him. Here he is showing off his new skill. And yes, now he asks for candy ALL the time–breakfast, lunch, and dinner, and in between.

Wes is usually fairly easy to take care of, but this last week has been tough. He hasn’t been feeling well. Part of it, I’m sure, has to do with the two molars coming in on top, and the two or three teeth cutting through in the front. Last week he had a fever one night, and seemed to develop a head cold, which also may have been related to teething. On top of all this, we’re finishing our basement and sometimes it’s just plain loud and distracting to be home during construction. He hasn’t liked the commotion, and we end up sequestered in a single room upstairs, as far from the noise as we can get.

He has turned from a generally happy kid to the kid who whines/cries/says “no” all the time. And I mean All. The. Time. Every day I’m exhausted early in the day, just trying to find ways to keep him happy. I used to have time to do non-Wesley related things, like the dishes, or folding laundry, or getting material ready to teach in my aerobics classes, but not anymore. All day, every day has been focused on keeping him reasonably happy, and therefore keeping my own sanity palpable.

But he still has these moments where you remember that you love him. Like last night when I was changing him for bedtime. I was at the end of my rope and, frankly, ready to dump him into bed and say goodbye for a good eleven hours. As I was struggling to get him to hold still long enough to put on a clean diaper I said, “Do you want to sing a song?” Instantly he stopped squirming and looked up at me and made the sign for “music.” So I said, “Get out your turtle,” and I made the sign for turtle, and he made his own version of the sign, and we sang about Tiny Tim the turtle who swam in the bathtub, ate all the soap, and ended up with a bubble in his throat. The whole time Wesley was rapt, engaged, and doing the song’s finger plays with me. And I managed to get his diaper changed.

I’m happy to report that in the last couple of days he’s been less whiny. I don’t hear “no” every other second. He’s been happier. His teeth still bother him but he’s been more bearable to be around. He still gets into trouble, though, like yesterday when I left him alone while he was drinking a bottle so I could change my clothes. When I came back I found him sitting on the couch, unloading the credit and ID cards from my wallet with a pile of coins beside him and a dime and a nickel in his mouth.

Today I took him to a few lighting stores to get some ideas for sconces in our basement. By the time we hit the third store Wes was winding down for a nap. He gets a little harder to manage the more tired he gets. The store was empty except for us and the lady helping us. She was really nice and didn’t mind Wesley flipping through the sample books or touching the lights on the display. She actually had a hard time keeping her eyes off him, and I worried Wes was making her nervous. But then she said that her first baby, born over thirty years ago, was a boy with Down syndrome. She was only about twenty at the time. She told me how much she loved her son Cole and how precious he was to the family. He was strong and healthy like Wes is, and she had been assured her son would be able to attend school and live a fairly mainstreamed life (which, thirty years ago, was not the typical reality for kids with Down syndrome). When Cole was 2 1/2 (Wes’s age) he was diagnosed with leukemia, and he died a year later. (Kids with DS are at a higher risk for leukemia, and I admit it’s one of my worst fears for Wes.)

She said that some people had told her (I guess trying to ease her loss) that it was better for him to have died than to have lived with Down syndrome, but we both agreed that those people were idiots. She told me a little more about him and how positively he affected her family, and when it was time for us to go she said, “Oh, he’s just so precious, I just want to hug him.” I told her she could, so she scooped Wes into her arms and gave him a big, long squeeze.

And then I got to take my son back into my own arms and buckle him into the car seat and drive him home and think about how lucky I am every day–even whiny days–to have Wesley and be his mom.

Wes is 2 1/2 and just started social laughing. He’ll laugh if he hears laughing, even if he doesn’t know why we’re laughing. Sometimes he’ll laugh spontaneously, just because he thinks he’s funny.

Here we’re watching The Dick Van Dyke Show together.

Yesterday I went to a special Mother’s Day brunch for moms in my county who have kids with Down syndrome. They served us a catered breakfast, which was nice, but the best part was that I didn’t have to bring Wesley. Sometimes it’s nice to enjoy a couple hours hassle-free, not needing to expend the energy required to keep a handle on a busy two-year-old.

I sat with other moms and we chatted about our kids. Our topics of conversation are different than moms would have in other circles. We get updates about the kids’ medical challenges, compare experiences with therapists, and, for younger moms like me, pick up tips about things to perhaps anticipate in the future. One thing that kept coming up was the kids’ propensity to run away. I had heard about DS kids getting out of the house without the parents’ knowledge before, but I didn’t realize it was so common. Every single mom I spoke with whose DS kid was big enough to open the front door has dealt with their kid running away. One mom found her nine-year-old at their neighbor’s empty house, playing. She had let herself in through the backyard. Another mom opened her door to find a policeman with her four-year-old son. I’m not sure she even realized he was gone, but a neighbor a few streets over had called in to report the boy riding his tricycle down the middle of the road. The boy wouldn’t get in the car with the officer, so the policeman followed him home in the car while he pedaled his trike. And the stories went on.

We talked about speech development. It’s interesting to hear how the older kids are doing with speech when my own kid is still so young. I’m curious sometimes how Wes will turn out. I sat with another mom whose son is only two weeks older than Wesley, and we both agreed that our kids seem really smart and able to absorb information (mostly). It’s the communicating back part that’s tricky. John and I have been listening to Wes “talk” and we hear sounds that he says over and over, which apparently mean something to him, but we have a hard time knowing what he’s saying. He will even say phrases, but you have to listen carefully because his sounds are squished together and not clear. Like, he says “idahit” for “I got it” when he retrieves a ball. It took us a while to realize that this was purposeful speech.

We had a guest speaker who specializes in behavioral problems with kids. His point was mainly to take care of yourself as a mom–especially as a mom with a special needs kid. I’m sure he wasn’t trying to be morbid, but he cited several instances of moms who tried to do everything for their needy kids and ended up going a little nuts and harming themselves and/or their families out of frustration and depression.

I think I’m maybe guilty of not trying to do enough for Wes, rather than the other way around. It’s fortunate that he progresses all right even with my minimal pushing. But I know what the speaker means about that feeling of trying to do everything. The MOST exhausting part of my job as mom is Wesley’s therapy stuff. I know these sessions are meant for him but they completely wear me out, every time. Each therapy visit means a concentrated hour watching and working with Wes and assessing how he’s doing and making goals for the next visit. It might not be so emotionally exhausting except that he’s my son and I want him to do well. The therapists give me a list of things to work on with Wes for next time. It’s a heavy burden sometimes to consider that the progress and well-being of your child largely depends on how much effort YOU put into him. And when the therapists come back and review our goals and Wes isn’t there yet, well, it’s a little disheartening to realize it’s partially because I didn’t work with him enough. It’s the same with the weekly playgroup I take him to with other developmentally delayed kids. It can be exhausting, both emotionally and physically.

On the other hand these sessions can be rewarding when Wesley finally gets something new. Often it’s at these sessions that we discover for the first time that Wesley CAN do something that I didn’t realize he could do. Those times are exhilarating.

Back to the brunch–it was nice to sit someplace comfortable, eat good food, and be told by someone else that what we’re doing as moms is special. I don’t often feel special because of my momness.

The other night Wes woke up about an hour after he went to bed, crying inconsolably. He was obviously tired and nothing seemed wrong, but he was very upset. I took him into my bedroom and let him watch an “I Love Lucy” episode on my lap until he fell asleep again. When I carried him back to bed I looked down at his face with his eyes closed and his mouth puckered together, and I recognized this expression as how he’s always looked when he’s asleep, even from the time he was a tiny baby. It made me think how he’s the same kid I gave birth to at just under 4 pounds, the same kid who wore preemie-size clothes and diapers for the first two months of his life, the same kid I would carry around everywhere in one arm and hold him in front of a mirror so I could see him better while marveling that we had a baby–the same kid, but now he’s older and bigger.

We’re having another baby this year and we’ll get to do the baby thing all over again. I forget what it’s like to have a baby. It’s easiest to remember the here and now. I wonder if in another year I’m going to have forgotten how Wesley yells “doh!” (“go!”) at himself and then runs like crazy across the room. Or how I’m forever finding pretzel remnants in the carpet and his car seat. Or how our table and chairs and the lower parts of our windows and fridge are constantly dirty with smudges of food and hand prints. Or how the other day John and I were walking with Wes between us down Main Street and Wesley was trotting when his pants suddenly fell down. Or how Wes claps at the cats to try to get their attention like we do sometimes. Or the hugs Wes gives me after I’ve disciplined him by making him sit in the Bad Boy Chair for a few minutes.

…and speaking of which, I had to pause to pull Wes away from the dirty kitty litter, which he was tossing around the floor of the laundry room and giggling at. I washed his hands and put him in the Bad Boy Chair while I swept up the mess, and then we had a brief talk, and then he gave me a hug. And now he’s playing. And I can already feel the exhaustion creeping up, and it’s only 9:30 in the morning on Mother’s Day.