Jonah's Journey

god bless wildwood

It's been hard to write about Jonah. Sometimes I want to write a whole book about everything he is and does, but the reality of caring for him makes me want to use my computer time to escape -- not to re-hash everything by writing it all down. And yet I need to write about him. So the compromise I have devised is to let some time pass between the events and the writing of the events....a few weeks can soften the reality and yet it's not so long that I don't remember the emotions and the way we dealt with them as a family.

What I'm getting at is that the 3 weeks between summer school and regular school this summer were really tough on Andy and Jonah and me. We rely more on Wildwood school than I ever would have imagined. On school days he is there from 8:25am to 1:45pm....that's a lot of down time for Andy and me (even though it's work time for andy and usually for me as well)....and it's time for Jonah that he loves, the routine of the school activites -- reading, singing, cooking, playground, music, art, field trips, special performers who come to the school, learning how to use the potty, using visual schedules & PECS, being with other kids his age --9 kids and 7 teachers -- it's invaluable to him, to us. God Bless Wildwood.

So the three weeks without school were hard. Andy and I operated as business partners who didn't particularly like one another: your turn, my turn. Your turn, my turn. You take him to the mall, I take him to the park. You feed him breakfast, I do lunch. You give him his bath, I put him to bed. On a smaller scale we do this every weekend -- and every couple with kids does this to some degree, I imagine.

But with Jonah it is different. He doesn't talk at all, so he can't tell you what he wants to eat, what he wants to do, if he doesn't feel well, why he is angry, what has upset him, what you can do to make everything better. He has a PECS book but he only uses a few: Cookie. Cheese Doodles. Go Outside.

If we do take him outside, he has a very limited attention span for anything at all. The fenced-in backyard doesn't help, since he'll get bored with whatever he's doing in 5 minutes or so and then just rattles the gate frantically and screams to get out. When we let him out, bringing his big wheel or wagon out to the driveway, he'll lie down on the driveway next to the toy and push it back and forth, tripping out on the way the wheels turn -- but they never turn just right, or he can't control how the toy turns, or the patterns aren't arranging themselves satisfactorally in his vision, or something -- but whatever the reason it again is enough to make him freak out. He'll launch himself down the driveway, wailing "ahh-ahh-ahh-ahh" across our neighbor's lawn and up her ramp to the front door, where we have to chase him back home and carry him kicking and screaming back inside -- andy and I have made this an "automatic inside" punishment and we are trying to get this through his head, though he continues to run next door, even though we are 100% consistent with the punishment. The rules the books give you about consistency and parenting and whatnot are often ineffective with Jonah.

He gets obsessed with strange things....this morning he wanted to balance 3 toys on top of one another, and when one kept falling off he exploded, throwing toys everywhere and screaming his head off. I tried to hold him, tell him it's okay, but he hit me and screamed some more.

If I play any music at all, he starts to frantically sign "more" meaning that he wants me to play "Istanbul Not Constantinople" by They Might Be Giants -- and I mean play it over and over and over and over, 20 or 30 times, while he bends himself upside down and grunts, or jumps up and down laughing, or spins himself on the floor, and if I want to/have to turn it off, beware the tantrum that ensues -- I mean a full-out blue-in-the-face screamfest that I think will rouse the dead.

You pick your battles. I'll listen to Istanbul Not Constantinople 27 times in a row, for example, but I won't let him climb his dresser and plunge his fist into the fishtank that sits on top.

Of course there's no taking him to a restaurant (he won't sit for even a minute), or an amusement park (he can't wait in line or even wait for the ride to start. Then, once it's over he won't get off. When you force him off the cost is, of course, a tantrum. Last weekend we took him to a community fair and they had a bouncity-bounce. There was no line so we put him in, and the young ladies operating the ride were nice enough to let him stay in, even though the other kids had a time limit. He loved it and it was wonderful. I was so grateful to the young ladies that I think they must have thought me crazy. But the world at large does not make concessions for a cute little normal-looking 3 year old who, to all outward appearances, is just a brat whose parents obviously don't know how to raise him).

If we take him to the park, he often will want to just walk the perimeter of the parking lot, running his hands over car bumpers until he's all black and filthy. Sometimes he wants to swing on one particular swing and no others will do.....other children are mere obstacles to his purposeful play, and he has no concept of personal space or appropriate social interaction. He will walk up to another person's stroller and try to push a random baby around. He will try to push a hesitant kid down the slide so he can go too. He will spin in circles, grunting, drawing stares from parents and kids alike. He will get suddenly angry and run full-out toward the street, and then tantrum when I grab him, throwing my glasses across the pavement and screaming like I'm killing him....I must use every ounce of strength to get him back to the car, secured in the carseat. I think: what am I going to do when he is 5? 10? I gulp back the tears and hear his ear-splitting shrieks, his red face furious, his juice flung at the window, parents staring disapprovingly at my painted bumper, its sticker declaring "Don't believe everything you think" -- I drive through tears back to the house as slowly as I can -- I want to give Andy his free time and I maybe haven't used up enough time yet -- turning up the radio to drown out his screams, finally shouting "SHUT UP!" into the car, becoming a Mean Mother, a person I didn't know I could be.

The divorce rate for parents of disabled kids is through the roof. It's stress stress stress all day, and it took its toll on Andy and me. Wildwood saved us after the three long weeks, and thus we are okay again.

I don't know how people do it...especially those who have 2 and 3 and more kids who are all disabled. We can barely handle the one.

And yet I don't want to do my son the disservice of just complaining about him. He is beautiful, and he can be fun -- he loves to play this game where I make a tent of the bedspread and we both get underneath...we babble to eachother and play tickle games and he shrieks with laughter. Andy invents games with him, too, and once in a while we'll actually all three of us have a good time as a family, together.

Jonah is clever and confounding, and Andy and I have no precedent for this life, this raising this child, who may or may not ever talk or learn or be able to live independently. We don't talk about it much because we are too busy living it, one day at a time getting through it.

I love my husband and son, I am grateful for my life and everything I have. But sometimes I just don't want to talk about it or even write it down. I fear misrepresenting things, sounding self-pitying.

I needed time to put between myself and these things that are happening.








"Whenever I'm caught between two evils, I take the one I've never tried."
         ~ Mae West (1892 - 1980)

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