Hurdles

I may be stating the obvious, here.  But kids with developmental disabilities face many daunting obstacles over the course of their young lives.  Often, they spend significantly more time overcoming these challenges than their typical siblings and friends do.

The Race

Typical kids start the race with a nice, open, level lane in front of them.  They can compete fairly with their peers, who start with the same setup.  Meanwhile, a child with a developmental disability faces a lane blocked by a series of hurdles, which he must get up and over, before he can complete the race.

This already slows his progress.  But not only that.  If he happens to knock down a hurdle in the process of leaping over it, he must go back, set it upright and attempt the leap again.  And again.  And again, until the hurdle is finally cleared.  This can be exhausting and demoralizing.  And it is far from fair.

When typical kids try something new, they usually succeed at it, after a reasonable interval. Then they move on to the next task.

Our kids have to try and try and try.  Sometimes, they even have to take a break from trying, from the supreme effort of trying, before they can get up the strength to put their shoulder to the wheel again.  Even after months and years of all that, success is not assured.

We recently had an experience like that.  We had to take a break from trying to acquire a certain life skill.  Concentrating on it was getting us nowhere.  So, I waited.  Years.  I had almost given up on my son ever acquiring this skill and had simply resigned myself and my family to a life organized around compensating for his lack of it.

Then suddenly, a few days ago, as if a saint had descended upon our house, dispensing miracles: the boy could do it!

By George, I Think He’s Got It!

I have not stopped telling him how proud I am of him, for that one, very hard-won, advance.

Typical kids easily surmount the same, ordinary tasks that can stop our kids dead in their tracks.  Tying their shoelaces.  Writing cursive.  Keeping clean. Making a friend.   Sometimes the challenges are academic: phonics, reading, memorizing math facts or times tables.  Paying attention.

The same to-do item, but our kids have to work ten times as hard on it.  And it may well take them ten times as long.

Before I started homeschooling, I was a bit angry at the teachers at school, who, in my eyes, abandoned the whole pursuit of mathematical knowledge too quickly with my kid.  Sure, it wasn’t, and still isn’t, his best subject, but really?  A calculator already in third and fourth grade?

Of course, now, we make use of the calculator too.  Drilling the times tables cannot go on indefinitely.  If it doesn’t stick, it doesn’t stick.  And, if you look around, how many adults actually calculate or do multiplication in their heads?  Nine times out of ten, I pull out my calculator/phone/camera/everything machine and get on with my life.  Why shouldn’t he?  You have to pick your battles.

But when they do get something that has eluded them, it can be life-changing for those around them.  I remember the moment when I no longer had to hold my child’s hand in a death grip every time we crossed a parking lot or got close to the street.  It was only one notch less on the vigilance meter, but my quality of life improved markedly.  When I no longer had to expect tantrums on a daily basis, when my child finally started sleeping at night:  these things can make a huge difference for everyone.

These things should be celebrated.

Expectations:  Start at the Starting Line

So, how do we go about addressing these obstacles, as directors of their education, as parents, as friends and siblings?  How do we set appropriate, “fair” expectations?  How do we lessen their struggle?  How do we celebrate their success as much as that of their peers?

First, we have to remember where they started.

When my oldest boy was small, a mere six months old, something happened out of the blue.  He suddenly had some very alarming seizure activity.  This brought him to the attention of the medical professionals.  It was then, as a prelude to the EEGs and the spinal tap and the MRI and the hours of observation and the eventual hormone shots, that I was told:  He might never walk.  He might never talk.  He might never feed himself.

(For more on this episode in our lives, see my post Our Stems Are Fragile .)

 Thanks for the Pep Talk

It is very easy, after enduring a talk like that, to feel downtrodden and miserable.  This light of your life, this beacon of hope that you have transferred all your wishes and dreams onto, cannot possibly be flawed.

And, in fact, these kids are not.  There is no flaw in the making of mankind.  Everyone is exactly who they are supposed to be, including our kids.  Some people attribute it to God’s purpose for each of us, or Darwin’s randomness.  But I tend to think of my mom, comforting me, saying, “Everything will be all right in the end.”

When you first tell people that you are raising a child with a disability, they often tell you that “You are never given more than you can carry!’  or “God chose you, because he knows you can handle it!”  or “I don’t think I could do what you do.”  It is always some variant on the notion that you are a saint to take care of a child with disability, or, at the very least, that you are supremely qualified for the position.

It is small comfort to know you made the cut, for the Advanced Placement class of child rearing.

I know these people mean well, but comments such as these tend to confirm your suspicions, that you are no longer viewed as a person deserving of respect or admiration, but rather, as an object of pity. You know that you are at the very beginning of a steep learning curve, so you hardly feel equipped to handle your own emotions, much less, to handle being the primary caregiver of someone with great, and as of yet, unfathomable needs.

People rarely say anything to address your main concern, which is that the child’s own challenges far outstrip anything that you as a parent could possibly face.  What about him?

“Tsk, tsk!”  is the usual, unhelpful response to this concern.  “Poor thing.”

Cheerleaders

Fortunately, these are not the only voices crying out in the wilderness.  A great many teachers, therapists and medical professionals make it their mission to try and address your child’s needs in the most positive way possible.

If you are like us, you were introduced to the joys of Early Intervention and Special Education from preschool forward, where the whole purpose seemed to be, to get your child “back on track”.  The theory seemed to be, that if enough services were available in the first years of a child’s life, he or she might be able to catch up to the others and live a “normal” life.

Gains were carefully cataloged.  Progress was celebrated.  If sufficient progress was made, services were discontinued, as “no longer necessary”.  Some of my son’s friends actually “graduated” and went on to a life of general education classes, or so we were told.

Don’t get me wrong.  I am grateful to all those fine souls who helped shape my son’s youth.  This is where he learned to walk at 18 months.  To read the alphabet and sound out phonics at age 4.  To use the bathroom regularly.  To speak through speech therapy till he turned 12.  This is where he learned please and thank you and how to greet someone.

It was more than we had dared to expect.

(Eating, it turned out, was never much of a problem.)

Rounding the Curve

Once I finally understood the many tests and evaluations that were given to my son, and what they actually meant, my vague fear of the future solidified into a rigid bar of dread.  The tyranny of the bell curve was inescapable. That one measure seemed to rear its ugly hump every time we turned around.

While the IEP and the teacher’s comments showed that my son was, technically, making progress, his rate of progress was slower than the average kid his age, and the gap between him and that average kid was growing larger and larger.

The instruction to just “pedal faster!” did not make sense anymore.  The entire Tour de France could not pedal hard enough and long enough to get him caught up.

At some point, the goal for our kids can no longer be “normalcy,” or “age appropriateness” as they sometimes say.  Instead the goal should be progress.  But this progress should be measured against gains already made, not against some mythical milepost that “should have been” passed by now.  The goal must be a happy life: a life of independence and inclusion to the greatest degree possible.

An Even Playing Field

My husband told me a story about something that happened at a public meeting that surprised him.

A deaf person attended the meeting and required an interpreter, so one was provided.  Or perhaps she brought the interpreter with her.  At any rate, the speaker was talking, and the interpreter was faithfully signing what was being said.

Then the speaker stopped talking to the crowd, and instead, talked, “off mike”, to the person next to him.  The deaf person was seated very close to the speaker, and the interpreter stood nearby.  The interpreter continued signing.

The speaker stopped, looking at the interpreter.  The interpreter stopped.

The speaker began again and the signing continued.

The speaker realized, with embarrassment, that even his private conversation with the person next to him was being relayed in ASL to the deaf person.  He felt a little hurt, a little insulted.  He could not believe that the interpreter could have been so callous, as not to realize that that conversation was private.

My husband tended to sympathize with the speaker’s point of view.  Since he was the speaker.

A Bar We All Struggle to Reach

My daughter, who studies American Sign Language and Deaf Culture at school, among other things, put my husband in his place.

“If you were a hearing person, and sitting in that same seat, you would be able to hear the speaker having a side conversation,” she explained.

“The job of the interpreter is to convey the exact same experience to the deaf person, as that person might have, if he or she were a hearing person.

You would not, as a hearing person, turn off your ears, out of respect for the privacy of others.  You might pretend not to hear, of course, but it is harder to pretend such things when you are signing at the front of a crowd.

The point of interpreting is to grant the deaf person the same access as a hearing person might have. That includes all of the words that a hearing person might have overheard, whether or not he or she should have been listening at the time.”

Can I say how proud I am to have a daughter who can articulate so well this very slippery concept, Accessibility?

A Fair Race

Having to fight and expend extra effort, to do everyday things, definitely stacks the odds against kids who live with a developmental disability.  Still, they have many successes, often hard-won.  They are stronger for it, stronger and more resilient in ways, than many of us.

They also experience disappointment, and that can be painful.  Painful to experience and painful to watch, if they are your children.

Somehow, we must improve the race course.  Make it smoother. Make it fairer.  Remove the hurdles.  Give the same opportunities for success to all.   After all the effort these kids expend, don’t they deserve some kind of trophy?  Some badge for conduct, over and above the call of duty?

In the meantime, what we can do is show our pride. Encourage them in their fight.  Let them know that we see how hard they are working. Point out to others how easy we have it, the vast majority of us who have no significant disability.  Stop crowing about our own successes, and realize, they are nothing, compared to some things that these kids do.

We also must assure our kids, our friends, and our neighbors with disabilities, that everything will be all right in the end.

And then work together to make sure it is.