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Documenting the Homeschool Experience

musings on ability and its many forms

Honor Roll for Those Who Can’t Make Honor Roll

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Perhaps your children never made honor roll while they were in school.  Perhaps that’s one of the reasons you pulled them out, or felt tempted to.  If so, this post is for you and yours.

What is Honor Roll For, Anyway?

In civilian life, honor is almost an outdated concept.  We think of Alexander Hamilton and Aaron Burr, dueling, and we laugh.  It’s hard to believe that they would risk losing their lives, over a thing as insignificant as a sullied reputation.

When we have holidays like Memorial Day,however, the word “honor” reappears, with pride of place.  We honor our veterans.  We honor the fallen.  We think of soldiers who go into battle as men and women of honor.  We honor their memory.

Remember the Heroes

So, too, in our schools, we remember the hard work that students have done throughout the year,  in particular, the hard work that resulted in high grades.  Grades, in the academic world, are the ultimate measure of greatness.

Of course, these high achievers should be congratulated.  Of course, their parents should be proud.  These students will, we all hope, go on to do great things.

Remember the Fallen

But Honor Roll is also a mechanism by which the schools separate the wheat from the chaff.  The “serious” students from the lazy bums.  That is, the rest of the school population.

At least that’s the way it feels, when you happen to be relegated, by default, to the latter category.

For those who do make it onto A/B honor roll, that cherished list, life is sweet.  There are treats, ceremonies, medals. The rest of the students get, in their stocking, the academic equivalent of a piece of coal.

There are those among them, of course, who are not lazy bums.  They are already trying their best.  And, for one reason or another, despite their best efforts, they still are not able to “make the grade”.  They often work longer hours, and try harder, than their more successful peers, yet, by the merciless measure of grades, they still fall short.

To these kids, seeing the academic elite on a pedestal does not motivate them to work harder.  It only shames them.  And makes their effort seem pointless.  Honor Roll is about as motivating to these kids, as participating in a public weigh-in is, to the  perpetually obese.

Should We Do Away With Honor Roll?

You could say that Honor Roll is unfair.  That it is an arbitrary system of layering the strata of motley humanity.  That its sole purpose is to ease the burden on any given college, as it tries to decide which of these unknown, untried children, it should allow into its hallowed halls.   All it has to do, is to remove the topsoil.  Skim the surface.  Take “the cream of the crop,” so to speak.

You could say that the educational system would be more equitable without grades, without the constant duty to categorize human beings into distinct subgroups, each more valuable than those below, and less so,  than those above.

But bean counters, if they were disarmed of the labeling system of grades, would not be pleased.  How could they be fair?  Would students  then have to compete on the basis of personality, or athletic prowess?  How else could we measure “ability,” that amorphous concept? How could we measure intellect, equally amorphous, and more or less, synonymous?

A New Honor Roll

Let us avoid these arguments by creating our own honor roll: an honor roll for those, for whom education involves a bit more, than just sitting down and memorizing a lesson.

Let’s create an honor roll:

  • For those who can’t be certain where their next meal is coming from, or whether they will be able to get safely to and from school.
  • For those who have to work to help provide for their family’s sustenance, even though they have not yet reached 18.
  • For those who suffer from emotional trauma, or neglect, or mental health issues.
  • For those who cannot sit for hours, as the schools demand, but who must move about, and therefore are labeled disruptive, or are medicated, to artificially slow them down.
  • For those with mental or physical disabilities, that get in the way of absorbing content, or, of accessing it.

Criteria

If measured by the right criteria, I bet every child could make honor roll.  I’m sure each of you has your own ideas about what criteria might get your child on the list.   In the course of a year, every child does something which he or she deserves to be proud of.  We, their parents, recognize it as progress, a welcome change for the better.  But often “better” is not good enough to even qualify for what most people recognize as “normal.”  And so, our children’s successes go uncelebrated.

Well, no more!

Here are ten  things from the last year, for which I am eternally grateful and unspeakably proud.  And for which my child should, if the world were truly fair, be honorably mentioned:

                                            2017-2018 Honor Roll

For sleeping through the night at least 50% of the time

A

For reducing the number of items thrown across the room by 90%

A

For learning to entertain himself for hours at a time so Mom can rest

A

For taking his medications without a fuss 75% of the time

A

For going to therapies/activities without throwing a tantrum 75% of the time

A

For participating willingly in homeschool for hours 80% of the time

A

For asking for things he wants 25% of the time

A

For fixing his own snacks and putting away decomposable items 50% of the time

.A

For reducing the number of times he shouts at anyone by 90%

A

For being a first-rate internet tinkerer and movie trivia buff 100% of the time

A

                                               ******Straight A’s!!!******

What would be your honor roll criteria?  And for those of you, whose children have IEPs or have had them in the past, don’t forget your percentages!!;)

 

Hurdles

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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.

Asking for Help

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Asking for help is hard.

My parents were always the ones who fought over who paid the bill.  I remember my mom throwing cash into the window of a relative’s departing car, rather than “owe” her the price of a dinner.  This is where I come from.  As a result, I have always found it difficult to ask for help.

But there are times, such as when you homeschool a child with a disability, or when you need to teach your typical kid a subject that’s hard, even for you, when you can’t just go it alone.  Help is not just desirable, it is indispensable.

Disregard the DIY Sirens

We live in a DIY culture, no doubt about it.  Old sayings, like:  “Pull yourself up by your own bootstraps!” and “Neither a borrower nor a lender be!” admonish us to pull our own weight, and not rely on others for anything.

Homeschooling has no doubt been influenced by this DIY trend.  This Great Recession Era attitude of independence and self-reliance has probably been part of the reason homeschooling has become so popular in recent years.  Many would describe it, after all,  as do-it-yourself schooling.

Still, a time comes in every homeschool parent’s life, when they need help.  A certain subject may require an expert to teach it, or it may just be outside the parent’s comfort zone: too artsy, too technical, too complex, too boring.

Frequently, the need for help is the result of a time crunch: work obligations, a holiday approaching, a serious illness or death in the family, Heaven forbid.  Any of these can turn the best-laid plans on their head.

Add a Disability to the Mix

If even ordinary homeschoolers sometimes need to ask for help, imagine the plight of homeschoolers of children with disabilities.

The world of special education in public school is a world of specialists:  Speech, occupational and physical therapists; specialized PE instructors; certified teachers with certificates in specific disabilities, such as autism; reading specialists; behavior analysts and social skills coaches.  Not to mention, in the higher grades, a certified teacher in ever subject.

It is enough to intimidate anyone.

How can a parent hope to duplicate that in a homeschool environment?  The answer is, they can’t.  And they don’t have to.

School vs. Homeschool

A school, in my view, is something like a general store.  Think big box, like a Walmart or a Target.  Large, lots of moving parts, and, on offer, pretty much everything anyone could possibly want.

But a homeschool is a specialty store.  Take the example of a yarn shop.  A low-budget, little hole-in-the-wall store, not too impressive on the outside.  But boy, when you go in!  They always have the exact yarn you want.  And exactly as much of it as you need.

Fortunately, for those of us who homeschool kids with disabilities, most of what schools offer can be found in the private sector as well.  Finding help is rarely an issue.  Paying for it may be.

Paying the Bill

Some states have implemented programs to help.  For example, the Gardiner scholarship in Florida is a program that assists parents of kids with special needs.  The program, which you apply for annually, can provide assistance up through the school year they turn 21, if the student with a qualifying disability is either homeschooling or paying for a private school, and has not graduated yet.  My son receives the Gardiner and we use it to pay for services I cannot afford on my own and certainly can’t provide myself.

In the past, we have had medical insurance or programs like Scottish Rites help us pay for things like speech therapy.  Many states now even have laws that require coverage for children with autism (and some, for other disabilities, as well) for certain therapies when recommended by their doctor.

What kind of Help?

The types of services we have used or looked into in the past include:

  • Art Therapy
  • Psycho-Educational Evaluations
  • Standardized Testing
  • Speech, Occupational and Physical Therapy (although these were while my son was still in school)
  • Facilitated Communication (we did not pursue this, but looked into it)
  • Annual Evaluations and Advice
  • Conferences or talks on subjects like Transition, Behavior, Communication, Social Skills etc.
  • Psychiatric and Medication Consultations

We paid for these services through a variety of methods.

Other parents I have encountered either in real life or on social media, have utilized applied behavior analysis, assistive communication devices, specialized curriculum, mobility devices, such as wheelchairs or large strollers, social skills classes, tutoring, etc.  The list goes on, and it depends on your child and the means you have available to you.

Caveat

I must warn you that some things tread the line between education and medicine, or between help for the child and help for the parent or family. This is rarely an issue when a service is self-pay, but once you are relying on any type of public funding, strict rules come into play.  With the Gardiner, there is a pre-approval process you can use, but once you submit an expense, it will be reviewed and either approved or denied.   The denials often come as a surprise to homeschooling parents, who may be used to having more or less free reign over what they use in their homeschool.

Beggars can’t be choosers, to quote another old saying.

Whether you are a homeschool parent of typical kids, and need help with French or Physics, or a homeschool parent of kids with disabilities, and need help with behavior or in-depth evaluations, you should never be ashamed of asking for help.  If you realize, and we all do, that you are falling short in one area or another, don’t hesitate to look around and see what is available.  You may be pleasantly surprised at what you find.

Planning Ahead

This year, I hope to look into the following services to supplement our homeschool and make my own path an easier one to tread:

  • Help with life skills, such as proper hygiene
  • Support groups and outings for parents of children with disabilities
  • Transition programs
  • Continued Art Therapy
  • Teens with autism events
  • Self-advocacy and disability awareness training
  • Psycho-educational evaluations
  • Reading tutoring

Seeking help, and using it, is one way to ease your burden and pave the way to a brighter future for your kids.  Another way is to get them to do the dishes once in a while!

Reunions

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This was the first Thanksgiving I have not hosted in a long time.

I originally intended to host.  I invited my parents and members of my family who don’t live here currently and asked them all to come to my house.  It was going to be a celebration of my newfound mobility, a six-month reunion to commemorate my hip surgery.  But it ended up happening differently and I didn’t even have to clean my house (much).  For which I am very thankful.

This year, we had Thankgiving at a local friend’s house (and a fine Thanksgiving it was!).  Then we had a nice Italian feast a few days later with my parents.  I can’t think of much, for which I am more thankful, than for the opportunity to live my life for so many years with my parents close at hand.

Coming Together for Better or Worse

My father has staged various family reunions over the years to commemorate his survival of a terrible car crash.  Now, over twenty years later, it seems inconceivable that we could have been robbed of those many years with him.  But at the time his chances seemed much more slim.

My father’s accident was probably my first brush with the notion that people with disabilities encounter obstacles just trying to live normal lives.  He worked as an engineer and was well respected in his field.  He continues to be lauded as having made a significant contribution. But one instant, in which his body encountered the full weight of an oncoming truck, changed everything.

I got a call from my mother from the hospital.  My father had already been airlifted and brought to intensive care.  He had broken his leg.  He had potential internal damage and a head injury.  He was in a coma, and would remain in one for weeks.

At the time, my husband and I had one little girl of about three, and lived in South Florida.  We traveled up to Tampa to visit my dad in the hospital.  All I can remember is the smell of French fries, and thinking, how strange, that a hospital should have fast food on site.  It seemed counterintuitive in this age of cholesterol consciousness.  But, of course, my kid was happy as a clam.

It was all extremely frightening, so much so, that my stomach seemed to be turning summersaults, and I was feeling a bit queasy.  Naturally my first thought was that I must be pregnant, but that was the least of my worries (and turned out not to be true.)

My mom seemed to take it all in stride, spending the majority of most days at the hospital with Dad, reading magazines and books, writing letters and fielding phone calls.  This was what the “for better or for worse” meant in the marriage vows.  In sickness and in health.  I tried not to think of the rest of words.

Changes in How We Seem to Others

We came back again a few weeks later.  My father had to have brain surgery because he had “water on the brain.”  It made me squirm just to imagine it.  He was conscious by now, and speaking.

I visited with him, after his surgery I think.  I remember the staples on his newly shaven head.  He believed me to be an attorney from Tampa who had tried Sierra Club cases against his company, an environmental “enforcer”.  He was very adamant that his company should be protected from people like me.

At another point in the same conversation, he believed me to be, instead, a lawyer for his own company, who would be litigating on his behalf.  It was all very confusing, and I was a little hurt that he did not remember me.  But his vocabulary was perfect, his manner very businesslike, and he seemed utterly unaware that, instead of his standard engineer attire, he now wore a gown that had an opening in the back.

As a result of the head injury and brain surgery, my father had been prescribed medications for epilepsy.  There was a significant danger of seizures, apparently, and he was to continue on this medication for months.  It caused an enormous change in his personality, one noted by everyone in the family. Years later, when my son had infantile spasms, a rare kind of epilepsy, I was very hesitant for him to try any medication, remembering what my father had been like, and how the medication seemed to change him.

Getting Help

After the doctors put a metal plate in his leg and did brain surgery, my father was eventually shifted to the rehab ward.  He had to do various exercises that resembled the exercises my son was required to do, years later, as a baby and toddler with a disability.  Just like my son, my father had OT (occupational therapy) and PT (physical therapy) and speech therapy.  They may even have given him cognitive therapy.

I remember him complaining mightily about having to do ridiculous beadwork.  His main opinion seemed to be that it was all a waste of time, except perhaps the physical therapy which helped him get back on his feet.  Nevertheless, he was a good student, because he did so in record time.  Some on his ward were not so fortunate after their accidents.  Many had lasting cognitive repercussions, even from accidents less severe than my father’s.

Changes in Home and Work

The next time I came, my father was being shifted back home, and the concern was whether there needed to be major architectural changes to accommodate his difficulties.  He was in a wheelchair at least part of the time at that point.  But I don’t recall any changes except perhaps a bar in the bathtub.  My father was very determined to get things back to normal, and stubbornly refused to be mollycoddled.

By the end of his hospital stay, several months later, my father was chomping at the bit to get back to work.  Here again, he encountered obstacles.

People with disabilities are frequently undervalued, or assumed to have lesser competencies than they actually have, and could prove themselves to have, if they were only given the chance.  My father got his job back, but things seemed different.  He did not feel he was getting the same respect, or the same amount or type of work as before.  After about a year of this, if I remember correctly, my father accepted an offer of early retirement.

Assumptions

You can understand how the severity of my father’s accident, the inclusion of a head injury, and whatever side effects the epilepsy drugs had on his personality, might have led some people to assume that cognitive damage had been done.  But this sort of reasonable, but unproven, assumption is dangerous.  It can limit the job opportunities and advancement available to people with disabilities. 

 My father was before, and remains to this day, among the smartest men I have ever known.  As soon as he got off the medications, his personality went back to normal, as well.  So, although these assumptions seemed reasonable, they were actually completely wrong.  My father went on to work in his field for many more years, and did consulting work as well.

Why Remember

When my family gathers for a reunion to commemorate his accident, we do not do so to be morbid.  It is a celebration:  a way for us to once again be amazed by the way he tackled and beat something so serious.  Something that could well have ended a less stubborn, less determined, less lucky person’s life.

Thanksgiving with my parents for the past twenty years would not have been possible, if my father’s accident, his recovery, and his stubborn refusal to be treated as anything less than who he was, had not turned out the way it did.  He had life-altering challenges, he struggled through them with the dedicated help of others, and he did not allow his disabilities to define who he is or what he can do.

We should, from time to time, remember the difficulties people have faced, that have brought them to where they are today.  Then, perhaps, we will be more willing to set aside our assumptions, and offer employment and opportunity and inclusion, to those we might otherwise prejudge.  Rather than using their own conditions as weapons against them to limit their success in life.