long days

When you have kids, there are a lot of ups and downs. One day your baby is saying "ma-ma," for the first time, the next she is taking her new incisors for a spin by chomping down on your thigh and not letting go. All parents deal with this.

Life with a kid on the spectrum is ups and downs on crack.

The good days are euphoric - everything is clicking, you are in a groove and bursting with optimism while trying to remember some of the stories you have heard about kids who "outgrew their diagnosis." Your biggest annoyance is people who say things like, "This kid needs speech therapy? I have never heard a child so articulate and charming AND polite!" (Like we just enjoy wasting our money and time on therapy appointments.) You are filled with hope that her future will be filled with loving relationships and higher education and a fulfilling career and maybe even a quirky but full social life.

During the good times, I am like a baseball pitcher on a hot streak. Our routine becomes sacred. Whatever supplements I have been giving, I keep giving. Whatever I'm adding to her bath (epsom salts for detoxification, lavender for relaxation, oatmeal for anti-itching -- I could get a second job as a bath valet at the Ritz at this point) I keep adding. I try not to change a single thing about her routine, her eating habits, her bathroom schedule -- anything I can think of that might possibly be responsible for the winning streak.

But then there are a couple of iffy days. Bad nights of sleep. More whining, a few near tantrums. A little slower to respond to questions. Her treacher mentions she has been a little out of it when you pick her up at the end of school. I know what is coming, and am filled with dread.

And then the bad days hit. It takes an extra hour to get out the door in the morning because every time she promises to get dressed, you find her 20 minutes later lining up princesses in a circle around her rug in her room. You lose your temper and she announces to the babysitter that "Mommy yelled at me this morning and I had to cry." Nobody likes a tattletale, pipsqueak.

The incomprehensible sing-songing and babbling picks up. The same people who wondered a few days ago why she is in so many classes and activities and interventions, stare at her searchingly, with a mix of pity and compassion and morbid fascination in their eyes, trying to figure out what is going on with her. I don't know myself, so I can't blame them for not being able to look away, I guess. But seriously, stop it. She is just a kid.

On these nights, one of us usually breaks down in bed. How will she possibly live on her own one day? Forget adulthood -- how will she make it through middle school without being tormeneted and bullied and harassed and picked on? I was miserable in seventh grade because of mean girls who made fun of my braces -- what do they do to kids who on occasion do somersaults and spin in circles and sing in their own language these days in junior high?

But then she sleeps through the night in her own bed and wakes up in a fabulous, chatty, mood (with dry underpants to boot) or surprises us with an especially sweet gesture towards her sister or empathetic comment to a sad or hurt friend, and I know the tide is turning again. And that the good days are coming back.

I wish it was in my DNA to accept that this is the life of a family with a child on the autistic spectrum. It would probably make it easier to weather the harder times, and I'm sure over time it will, to a certain extent. And as we have progressed down this road, we have been able to raise the level of the lows, I think. They are not as bad as they once were, I am pretty sure.

But every time she ignores me when I call her or refuses to look someone in the eyes, I am irritated and frustrated and exhausted and disapointed and despairing. But also: my resolve hardens. Whether it is a supplement, or a diet, or a therapy or some yet to be invented intervention, we will figure out how to crack her code. We simply don't have a choice.