Stop the Car! And Other Thoughts About Special Needs Parenting…

By Dr. Laurie Katz Braun
In Guest Bloggers, Original Articles

Stop the Car: Special Needs ParentingI had a familiar dream last night. I was driving our car, kids inside, and the brakes weren’t working. No matter how hard I pressed the brake pedal, the car wouldn’t stop.

In most of these dreams, I’m eventually able to press down hard enough that the car comes to a halt ‘just in time.’ Just in time to avoid running the red light or hitting the car ahead.

Last night’s dream was different. No matter how hard I pressed, the car simply wouldn’t stop. I ran red lights and sped down hills, frantically trying to honk the horn (also not working) to alert other cars of danger.

A pragmatist might say I’m having this dream because I just took a safe driving course to reduce my insurance rates, and I have driving on the brain.

A psychologist might say I have a fear of losing control and this recurring dream is a safe way to express my fears.

But I know what a special needs parent would say. A special needs parent would say: Welcome to your life. Where there are no brakes. And no breaks either, for that matter.

As many of us reading this know, special needs parenting is a place separate from the norm. A place where all the safety tools aren’t quite in place. A place where it takes not just one mechanic, but an entire team of professionals to assess the areas that need a tune-up. A place where it may take quite a while for the problem to even be diagnosed.

In my dream last night, it was not just about pressing the pedal as hard as I could anymore. This time the pedal itself did not exist. The car was on auto-pilot and there was no way to stop it. All I could do was try to alert others of the problem and do my best to steer out of danger.

It was like a video game—where I was speeding down hills, swerving to avoid cars in my path, trying desperately to maneuver the car uphill so that the natural force of gravity might slow me down.

Eventually, exhausted and afraid, I saw a service station out of the corner of my eye. Steering the car wildly in that direction, almost taking out the entire line of gas pumps, I managed to maneuver my way into the station, and the car spun to a halt. I could hardly breathe.

But the dream didn’t end there. After I comforted my terrified children, I spoke to the mechanic, who told me that the system just had to be rebooted.

I looked at him incredulously and spoke first calmly and then with rising panic: “This is a recurring problem. I’ve been here multiple times to reboot the system. I don’t want to reboot the system any more! This car is broken! It is dangerous! It is undrive-able! This time I want a new car.”

I awoke. But not really.

The experience of driving a car without brakes is remarkably similar to that of special needs parenting. You really can’t go to the same mechanic everyone else goes to. You need specialized attention.

Scheduled maintenance doesn’t look the same. It’s not just about a yearly check up and an annual flu shot and ‘see you next year.’ There are a whole series of check-ups from a whole series of professionals, counselors, and experts. The appointments never really end.

There are visits that ‘typical’ car owners don’t need at all…Extra body work and more comprehensive tune ups and specially designed safety equipment. (Think IEPs and advocates and appointments with whoever at the synagogue will listen to you!)

The expenses are much higher, the time commitment is much greater, and sometimes the brakes STILL don’t work.

And then there are those truly awful moments when you’re ready to trade in for a new car. But finally you realize…

The yearning for a new car doesn’t mean you want to trade in your life…(or worse, your child!) Quite the contrary…you want this very child, this beloved one you longed for and have cared for and love so deeply. But you do want life to be just a bit easier for them. And for you.

I often joke that I love special needs parents so much because we all have such clear perspective on what is important in life. It’s not about getting the A or going to the Ivy League; it’s not about what social circles you’re in or about how strong your Hebrew skills are. No, it’s really about something very simple: Having a friend, being able to read one day (or speak, or walk, or whatever your wished-for goal is for your child), growing up feeling okay about yourself.

At our best moments, we special needs parents can laugh about this. About how clear our perspective is, about how simple our hopes are. I love special needs families because we don’t talk about “raising the bar.” On the contrary, we like keeping the bar low enough that everyone can leap, step, stumble, or even be carried across it.

What do we need our communities to know? That we are HERE, yearning to be part of our communities, yearning to find a way in, to find a space for us, even though our engines aren’t always in perfect working order and more often than not we’re waiting for an appointment for the next tune-up.

I pray for the day when I won’t long for a new car, when I feel my community supporting me as I wait in line for the next mechanic visit. Or better yet, when our community joins together to learn more about car repair, so we can make sure that all members of our community can travel safely and calmly to the places they want to go…even though the destinations may not be the same.

Stop the Car! special needs parentingDr. Laurie Katz Braun is a rabbi, educator, and writer living in New York City. She currently serves as a pastoral counselor for special needs families and is a writer with the BMI musical theater workshop.