What we did and when we did it. Sometimes. People, places and events to remember.
Thursday, April 24, 2014
Here's a piece of advice: don't ever ask me for advice on work/life balance. I don't know how to do it. I've been pulled in multiple directions lately, and the whole family is feeling it.
Ben is starting preschool next year - in a private church-based preschool 3 days/week, and in the public school's special ed preschool class 2 days/week. Ben has to undergo some evaluations, and then Emmett and I will sit down with representatives from the school district to figure out Ben's IEP (Individualized Education Program). We'll have these IEP meetings at least once a year until Ben finishes high school. I've been researching Ben's rights and thinking/praying about how to advocate for him in this situation.
Meanwhile, Evan and Corrie are both excited about the church Mother's Day musical. Just typing those words reminds me that we totally missed rehearsal tonight. Oops. We ran errands instead. I took all three kids to the grocery store, Hobby Lobby AND Wal-Mart, plus we picked up milkshakes from Sonic and visited Emmett at work. Then I fed them frozen pizza and put them to bed - we skipped baths.
And Evan is still playing soccer. Note to self: don't forget practice tomorrow!
Plus ... we have exciting plans for the RGVDSA this year, and I have a long to-do list. It has been wonderful to see the organization grow, but there's a lot of time and work involved. And my vision feels bigger than my abilities.
Ben and I drove up to the school district this morning to drop off some paperwork, and I realized that sometimes it is just hard to be a parent of a nonverbal kid. Ben babbles - he's very expressive - but he has no reliable spoken words yet. He has tons of signs, so if I'm looking at him, we can have conversations. But in the car, I can't see his signs, so it's easier to just turn on the radio or talk to someone on the phone.
Part of me is grateful to have one quiet kid (Evan and Corrie talk all the time) but it's not fair to Ben for me to view his silence as my free time. When I would drive with the other kids, we would sing in the car or point out the windows at trees or machines. And I remember to do that with Ben some of the time, but I often find myself just forgetting to interact with him. My mind goes straight to that to-do list.
I have similar moments with Evan and Corrie. "Just wait ..." I say, while I type one more email. "Instead of running in the race, will you sit with me at a table to hand out info about Down syndrome?" I ask. They lose some of my time and attention so that I can be an advocate for Ben and for other individuals with Down syndrome. It is their sacrifice.
So ... tonight while the kids and I were running errands, I asked all three of them, "Do you mind? Is it OK that I do stuff for the Down Syndrome Association? How do you feel about it?" I want them to know that they are the most important people in my life.
They responded immediately.
"It's great, Mom! You do a walk, and then there's cotton candy! And popcorn!" exclaimed Corrie. "And it helps the best baby in the world - Ben!"
"It's the right thing to do," said Evan. "You help people."
And Ben smiled and waved and signed a song.
I think this will be a long journey - figuring out the balance between family and service. For today, I am just thankful that these three (and Emmett!) are on my team.