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.
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