Lamentations

Whenever parents of children with disabilities gather, you are bound to hear a few complaints.

I was recently at such a gathering, impromptu.  I was thrown together in a room with several strangers, people with whom I had nothing more in common than the fact that each of us had a child with autism.

Our children were nearby, but occupied and  out of earshot, so it was safe to talk.  The kids were all in the middle to high school years, some of the most trying years for many parents, regardless of the type of children they may have.

And yet everyone put on a brave face.

What kind of complaints do I remember hearing, as my older (typical) daughters made their way through middle and high school?  Ah yes, it’s all coming back to me now.  Hair color choices.  Piercings.  Tattoos.  Poor boy- or girlfriend choices.  Drugs and alcohol.  Depression.  Trouble with school.  Loneliness.  Estrangement.  Fear of car accidents and the cruelty of other teens.

Now, the discussion is a little different.

Laundry and housecleaning issues.  Obsessions.  Broken devices.  Aggression toward siblings or parents.  Fear of elopement.  Fear of bullying.  The cost of special diets or therapies or communication equipment.  Guardianship.  Exhaustion.  Medications.  Age-appropriateness, or lack thereof.

Why More Difficult?

Is it really so much harder to parent a child with disabilities than a typical child?

Most people would probably say yes.  And I wonder why.  There are certainly plenty of problems to go around, no matter what your child is like.

Perhaps the difference is the perception that adulthood does not necessarily mean a break in the intensity of a parent’s involvement, if they happen to have a child with a disability.

We do not necessarily get to hand over the car keys, for better or for worse.  We can’t give them a deposit for first and last month’s rent and then trust them to figure out the rest.  We can’t even presume that marriage is in their likely future.  We hope, we wish for everything good for our children.  But we can’t exactly count on all the typical things happening, and certainly not on them happening in the typical way, or at the expected time.

Not that  many parents, these days, throw their children to the curb the moment they turn 18.  But there are definite milestones.  There is a process of letting go.

But you cannot say that it is all suffering, not by a long shot.

In a way, you are sheltered from typical problems, at least for a time.  My baby never cried, while I knew lots of moms who dealt with colic.  In this I considered myself lucky.  It took a long time for him to speak.  I can’t say how many moms told me I was lucky to have that bit of silence in which to think my own thoughts.  My son had a very small classroom, with lots of support.  Other parents were angry about overcrowding or lack of resources in their classrooms.  I should certainly consider myself lucky not to have to deal with that!

But as our children get closer to maturity, our worries become intensified, the outlook for our children appears more bleak.

We hear about waiting lists for benefits, for assisted housing.  We learn the true (prohibitive) cost of “inclusive” college programs that offer an “independent” experience for our children, only at two or three times the cost of a regular college education.  We think about adding onto our houses, to allow for an adult space for our now adult-sized child.  We notice the stares of people as we pass, as our children persist in idiosyncratic behavior that others used to find charming, when they were young and cute, and which others now seem to find creepy, at best, and, at worst, signs of some malignant, predatory intent.

Our children haven’t changed, but people look at them differently, as they approach adulthood.

We scramble to make decisions about medical homes, about benefits and decision-making authority and guardianship, amid a chorus of enlightened voices that insist on maximum individual self-determination.  We can’t help but think, “But what if he self-determines himself into an early grave?”

Reassurances

If we are parents of typical kids, we can let go, although it is hard.  Because all along the way we are given little reassurances that it will be okay.

We give the kids the keys to the car, wincingly, unsure if they are ready, and then they reappear, hours later, both child and car intact.  We leave them alone for a few hours, and the house does not burn to the ground.  We send them off to college, and they actually pass most of their classes.  Maybe they are ready.  Maybe they can do this without us, after all.

Some of us parents of children with disabilities are still waiting for those reassurances.

That moment when, indeed, our child does look first before crossing the street.  He does tie his own shoes.  He does refrain from inappropriate touching or staring.  We cannot even imagine the moment when they will be ready to live alone.

An Underlying Path to Success

But.

Think of a typical child’s experience.  Everyone knows they will someday need to drive a car.  So what does the school offer, the year of their 15^th or 16^th birthday?  Driver’s Ed.

Everyone know they will someday live alone, or at least independent of their parents.  So they go to camp one summer.  Or they fly to a relative’s house for a month.  Or they spend a few weeks in a summer college program in their late high school years.

Baby steps.

Where is this structure, this underlying path to success, for a child with disabilities?

It is not so clear.  It is not so available.  It must be cobbled together by each parent, de novo, as if this had never happened before to another individual in the whole history of the world.

In middle school, in high school and after high school is over, whether the children are homeschooled or in school, this path should be laid out for them, clearly, consistently, repeatedly.

Assuming that it exists.

Why is it that at the moment that this legal fiction called adulthood begins, the burden of seeking out and finding supports suddenly and ruthlessly shifts to the individual with disabilities?  Meaning, in essence, to their parents, if they are lucky enough to have parents. The supports that children with disabilities need, which it is easy to predict they will need, should be reaching out to us, not us to them.

I think I know why the general perception is, that it is more difficult to parent a child with disabilities.  Besides the obvious complications of health or doctor’s visits, or therapies, besides the irritations of bullying or IEPs or special diplomas, or trying to find a homeschool group that will accept your child’s eccentricities.

There’s too much on the parents, that’s why.

It’s time that someone else picked up the slack.