Thursday, September 23, 2010

There'll be scary school stories and tales of the glories...

When Staples decided Back to School was "the most wonderful time of the year. Fa la la and ho ho ho," they didn't poll parents of children with special needs. I much prefer having my kids in my hair all summer to being on a short leash tethered to an elementary school and on the speed dial lists of an entire educational team.

And being around all the other typical families in the hallway and playground makes making comparisons far too easy. So, rather than fighting it, I'm going to go with it.

I shall now compare the school-related concerns of two equal, yet different populations: Parents Of Neurotypical Kids (I'll call them ponks), and Parents Advocating For Unusually Needy Kids (pafunks). (Yes, that's the best I could come up with. How many hours do you think I have to budget for acronyms?) My purpose, as always, is not to cause offense or enlist pity, but to stir up gratitude and understanding in my typical-life friends, a sense of "someone else gets it" in my fellow advocates, and a sense of humour in myself. (I know it's in here somewhere....) To entertain you. And, of course to vent. Because we all need that sometimes. Please, indulge me.

So allow me to present (through the wonders of that intimately distant, anonymously exhibitionist tool called the internet) the conversations that happen only in my head:

PONK: I hate packing lunches.
PAFUNK: I wish my kid could stay for lunch, but the EAs are on lunch break.

PONK: I hope my kid gets a speaking part in the Christmas play.
PAFUNK: We just hope our kids will be allowed to participate in the chorus, and if they do, that they don't fall of the stage when they start to spin.

PONK: I'm worried my kid will follow the crowd.
PAFUNK: Following the crowd is how kids learn to be kids: it's why I wore neon pink gel shoes in 1985 and threw them out in 1986, and why I stopped picking my nose in Kindergarten (okay - first grade). I wish my kids would take more notice of other children and learn to socialize, play, dress, and talk the way they do. G. used the term "freaked out" last week, and I almost baked a cake.

PONK: I'm nervous about the grade 5 sex ed. curriculum. I hear it mentions masturbation.
PAFUNK: Ooh, big deal. There are many parents who've had conversation with school staff about teaching appropriate (bed)/inappropriate (front of the classroom) places for self-stimulation since Kindergarten. They're thinking: Been there, wrote the social story. Chill.

PONK: I'm not sure my kids is getting grade 3 math. How will he ever become a brain surgeon?
PAFUNK: We're happy when kids on the spectrum manage the sensory overload in the classroom long enough to hear 3 minutes of math.

PONK: I hope my kid has a nice field trip.
PAFUNK: I pray my child is allowed to go on the field trip despite short staffing. And if she does, that she won't wander off downtown and get lost this time, or run into the street and narrowly miss being hit by a bus.

PONK: My kid was sent to the office for talking back to the teacher.
PAFUNK: Our kids are sent to the office every day. If no furniture or staff are permanently damaged in the process, we don't even ask.

PONK: There are like one or two inservice days every month when the kids can't be at school; it's hard to find childcare.
PAFUNK: There are so many days when we're transitioning into a new classroom, adjusting to a new medication, weaning off a bad medication, or wearing out at the end of the school year, and he can't be at school all day; it's almost impossible to find childcare.

PONK: I'm not sure whether I should give my child this cold medication or just wait it out. What if it's bad for her?
PAFUNK: This medication he has to take daily in order to function....I hope he doesn't have to stay on it long term...I don't want it to make him suicidal or diabetic or grow horns like the doctor warned it could.

PONK: I'm nervous about parent-teacher interviews.
PAFUNK: Every day is a parent-teacher interview. Every time I walk into the building, I get the good news/bad news report. Some days I get asked whether something's "going on at home." Other days I get a "you need to try another medication" message. Some days the staff walk away from me in frustration; other days we almost hug and sing Kumbaya right there in the hallway. At the scheduled parent-teacher nights we just smile and wave.

PONK: My baby is going off to kindergarten/college. I cried that whole first day because I realized my baby is growing up.
PAFUNK: I have friends who have had to put their kids into foster care because the child's autistic meltdowns were putting their marriage or their other children's lives in danger. They cry every day because their baby is gone. I get the melancholy and mental adjustment of sending kids to school for the first time, but please don't be hurt if I save my sloppiest tears for others.

PONK: I'll do anything to help her succeed. Some days, it takes everything I have.
PAFUNK: Me too. Now we're talking.

Where pain and theology meet

I was at a staff retreat at Gimli last week. (Two days of adult conversation - yippee!) Our first exercise was to share with each other a time line drawing of all the major ups and downs of our lives. Happy things above the line; painful things below.

Because most people were in pairs, and we were the odd group of three, there was less time to give each other feedback on our stories, but what I did get from the man and woman in my group was this reaction:

"Whoa, we haven't lived through nearly as many things as you have."

She was middle-aged. He was in his 70s. I'm a fresh 37.

Here are a few of the alternating lows and highs of my short little life: my brothers' Fragile X Syndrome, discovering the clarinet, being the target of school bullies, the spiritual high of my baptism, my Dad's illness which peaked when I was 14, working at summer Bible camp, an utterly lonely summmer mission trip to Bavaria, marriage, miscarriage, seminary, multiple periods of unemployment, motherhood, the autism and ADHD diagnoses, the start of my writing career, overwhelming teaching stress, my wonderful church, my grandparents' deaths. And that's just the stuff I'm willing to talk about.

One of my partners in the staff exercise said, "So much has been out of your control." That's why I've become a fan of the sovereignty of God - I find the idea that all the messy details of my life, like those of the man born blind in John 9 - fit snugly into the big picture of God's glory - contrary to most Mennonites who focus on the randomness of pain as caused by fallen humans exercising free will. I resonate with a God who's in control, because I know without a doubt that I'm not. Life throws stuff, and I barely have enough time decide which way to roll with it.

I find it interesting that some people facing hardship swing toward thinking God had nothing to do with it. The idea that God may have a purpose in their pain is offensive to them. The thought that God sends angels to steer some careening cars and not others to them smacks of divine favoritism. They would affirm that "God is present in this, but he sure didn't send it."

Others, like Russ Toews whose son committed suicide say,

"God is sovereign. Nothing happens that is outside his control or that he does not allow.

"I find when I talk this way, particularly in light of my son’s death, many people become uncomfortable. They quickly point out that God is not the author of illness, death, or bad things. I’m not arguing with their point, but you may be surprised to hear I don’t find comfort in the thought that God did not cause my son’s death....

"I do find comfort in knowing that someone is in control, that life is not just a series of random events, some good, some bad. I find comfort in knowing that even though bad things happen, there is someone who has seen ahead everything that will happen and allows it. Brad’s death did not catch God by surprise, as it did us."


I resonate with Russ' words. I too find no comfort in someone saying that God didn't choose or cause my children's disabilities. Autism and ADHD are so intertwined with little personalities, it begs the question: then who did God plan to send our family anyway? And where did that person go? If God didn't intend to bring glory through their unique struggles, triumphs, perspectives, and gifts, then what's the point?

It's interesting how our emotions, particularly grief, can shape our theology so profoundly, and yet take us in such different directions. It has implications for how we choose words of comfort - with our ears screwed on tight. And it has implications for how we discuss theology - with sensitivity; any debate on divine sovereignty might mask a cry for a lost son. May my words fall softly.

Two things I know for sure: no matter which side we emphasize - the human choice or the divine - we all need to hold both in tension; both are evident in Scripture (See Exodus 7:3 - God hardened Pharaoh's heart, 8:14 - yet Pharaoh hardened his own heart, 11:9 - purpose: God's glory) and our experience. And secondly, as long as we're talking to him and each other in our grief, the glory and comfort will flow, whether we call him "present" or "sovereign."

He is.