This week I received the most delightful email from Jack’s teacher. I always get a little panicked when I see a message in my inbox from one of Jack’s teachers or if I see that his school is calling, because the reason for the note or the call could well be to tell me that Jack has been lost, biting people, throwing laptops, or going to the bathroom somewhere other than the bathroom.
But this week, Jack’s teacher Heidi wrote simply to say what a delight it is to have him in her class. She wrote that she loves Jack, and enjoys the sweetness he exudes from the moment he steps off the bus with hugs for everyone. She said that he is so smart and is making great progress with his academic goals. It was a smiling-through-tears moment for me.
I’m always grateful when people see Jack as we do–rosy, happy, funny, and sweet. I attended a conference for parents of children with special needs a few years back where singer Michael Ballam gave the keynote address. He has a son with disabilities, and in his remarks he noted that all of us there made up a select group of people who collectively saw our children as people, rather than disabled people.
I don’t think that most people look at children like Jack and consciously do this. But I do find that sometimes the disabilities a person has can really get in the way of seeing the whole person. And other times, people simply may not have much experience with those who have special needs and might feel inadequate in knowing how to interact with them.
I met my support group friends for dinner last week and basked in their companionship and complete understanding of my esoteric problems. This time we talked about struggling to find sitters who can handle vomit, poop, and unpredictable behavioral outbursts. We discussed the challenges of incorporating a new baby into our already quite differently-functioning families (as two of us have recently done). We swapped stories of extended hospitalizations, irritating geneticists, and siblings who have needs too.
But the discussion which has been percolating in my thoughts all week was the one about taking our kids to church. They don’t judge me when I say that church attendance is a complete nightmare for me. Except that it’s worse than a nightmare because I am fully awake when it plays out each long and difficult Sunday. Currently, Jack just doesn’t fit in at church. It’s not that the people there don’t care about him–they do. But many factors stand in the way of making three peaceful, consecutive hours at church a reality for our family.
So these days, either Jeff or I stays home with Jack, as well as with the belligerent preschooler who has not yet taken a shine to attending Sunbeams and the preemie who can’t venture into confined public spaces until RSV season ends. We alternate teaching Gospel Doctrine each week so that one of us is manning the Sunday School class while the other is on kid duty. You know things are bad when you realize it’s WAY easier to teach the Gospel Doctrine class than it is to care for your three youngest alone at home.
We’ve been shaking things up a bit some weeks, having Jack do a few practice runs at “being reverent in sacrament meeting” along with “cooling it with the loud crinkling of the Smarties wrappers,” while Charlie sometimes attends Sunbeams with Mom in tow in preparation for the day he is ready to go solo. There is a lot of back and forth from our home and the church to get eveyone where they need to be. It’s kind of a three-ring circus, but that’s how we roll.
Parenting my children is sort of like taking a master’s seminar in learning the art of flexibility. It’s a quality I’m slowing starting to perfect. When I returned home from my support group dinner this week, I found that Jack had thrown a bowl of applesauce at the walls and drapes before knocking his little brother to the floor and smashing three picture frames on the floor. I wanted to be mad, but I just couldn’t summon the energy. I felt so buoyant from my support group fix, and so grateful for my long-suffering and über-cleaning husband, that I just chalked it all up to another thrilling day with Jack. We sure do love him.