Special Education Law Blog

A is for Artist, B is for Belief by Lori Miller Fox

Milestones; what are they? We hear about them from the moment our children are diagnosed, for some, born. For most of us, they're not even mile"stones"; they're pebbles, fragments, grains of sand, achievements so small, so tiny, so minuscule that only we notice them. And we keep them to ourselves, afraid some "professional" "paraprofessional," "pseudoprofessional," or interfering busybody might discount them into oblivion. 

I myself,  have given credence to too many naysayers, too often, for too much. I've wallowed in the aftermath of the dream-stealers, driven to sitting in the corner with a can of Reddi Whip, jar of fudge, half-gallon of low-fat ice cream, a serving spoon, and no bowl, recalling the compilation of shortfalls, failures, and stagnations, silently crumbling. I have been robbed of the "bragging rights" so richly enjoyed by parents of the Gymboree, beauty pageant, geniuses, only to be replaced by a pity party award, from a contest I refuse to enter.   

Raising a child with a disability can be fraught with seemingly endless periods of hopelessness. You bargain away abilities, offering them up to the Universe, in exchange for some other certainty, only to realize there is no certainty in disability -- except for one: individuals with disabilities don't fit the mold. And because they don't, school staff, career counselors and even parents, oftentimes give up all hope of pointing them toward a happy, successful and fulfilling life. More importantly however, it is because individuals with disabilities are individuals, they should be seen, treated, and encouraged as such. Paths should fit the individual, and measures of success should be uniquely calibrated. 

This weekend, I hit a milestone of my own;  I experienced what it was like to be proud of my son. Pure pride! Not the kind of pride mixed with an apology, nor the kind of pride you need to over-explain, or over-justify, for an outsider to even try to pretend to validate, but the kind of pride with which I'd never expected my family and I would be blessed. It is because of this experience, and in hopes of inspiring other parents, especially those at the beginning of their journey, or wallowing at the local Dairy Queen, that I wanted to share my steadfast belief that we need to pound their outdated mainstream, traditional, milestones into rubble, and create non-conventional pillars of achievement of our own.

My son, now 25 years old, along with other highly-talented, edge-pushing, opinion-changing artists with disabilities, received recognition for  his art in an exhibit at the Ukrainian Institute of Modern Art. The exhibit, entitled A is for Artist, is not a "cotton balls and glue" "good job, Buddy," kind of art show. It is a legitimate display of artistic talent that validates just one of the alternate paths to success that individuals with disabilities are not often told they can take. 

Twenty-five years ago, I would never have envisioned that my son would one day have a career, as an artist or otherwise. I feared there was no valued place in society to which he could aspire. And certainly, no persons other than those in his immediate family who would celebrate his contribution to any community. Yet, to my glorious delight, a young woman at the exhibit opening, said the most beautiful, eye-opening, reality-changing words I'd ever heard: "I'm a fan of your son's work." If that's not a reason to change anyone's belief-system toward people with disabilities, I don't know what is.

I have to thank The Arts of Life, a studio for artists with disabilities, for breaking all the rules; for seeing artists as artists, and measuring success as success. And especially for demonstrating that all people are different, but the right to hopes and dreams is universal. 

I admit, I am not always a cup half-full kind of person; nor a half-empty either. In all honesty, most of the time, my cup's bone-dry. However, today my hope runneth over. So I wish the best for you and your family. And wherever you are on your journey, please lick your wounds and your spoon, and when you're ready, put one foot, or crutch, or wheel, in front of the other, trusting there will be a fork in the road that takes your child on his or her path -- and hopefully that path will be handicap accessible.

A is for Artist will be open at the Ukrainian Institute of Modern Art in Chicago through November 26.  It is an inspiring, uplifting, validating experience, one which you will never forget. 

 

 My son Cole and me with one of his three paintings in the foreground.

Another of Cole's paintings above our the heads of our proud family.

Count Your Blessings? by Lori Miller Fox

People say we should count our blessings, and I couldn’t agree more, except when those “blessings” spring from the mouths of unwelcome, disrespectful strangers.  I don’t know about you, but I can too often recall some truly blessed moments spent with my family out in the community, only to be ruined by a “well-intentioned,” personal-space trespasser imposing him- or herself on our wonderful day just to “bless our poor, imperfect, blessing-deprived child.” My son has not only been intrusively blessed, but he’s also been questioned, pitied, advised, quizzed, patted on the head, and unfailingly, named “Buddy.”

And although I’m ashamed to admit it, every time my son gets “sympathetically accosted,” I’m so shell-shocked and taken aback in that moment, that I can’t think of the right thing to say to diffuse the meddlesome, uninvited “well-wisher.” That is why I’ve decided to arm myself (and hopefully you too) in advance with a few preplanned, “off-the-cuff” responses to some of the all too common space-invading intrusions.  Please feel free to adopt any you see fit and together, hopefully those of us who prefer it, will be blessed only when we sneeze.

Special Needs as a Second Language by Lori Miller Fox

One of the most difficult things about having a child with special needs can be feeling like no one understands what you’re going through. Friends, even family, can appear to be totally “oblivious” to your family’s challenges, as well as their achievements. I sheepishly admit, I used to get impatient, frustrated, even angry with those from the “outside world,” until I realized, it’s not that they don’t care, are disinterested, or unfeeling, we just don’t speak the same language.  So to correct this growing problem that is spreading across our nation at lightning speed, and to open the lines of communication between neighbors and friends, even school personnel and parents, I’m compiling a glossary of special needs terms and their common definitions.  Here is just a sampling. Please, talk amongst yourselves and feel free to add your own to the growing glossary.

Hallowhining By Lori Miller Fox

As some of you might remember, I have always found Halloween to be a particularly difficult holiday. Whether it’s having neurotypical kids ring my bell, or just seeing groups of neurotypical peers in the distance,   it’s enough to make me cry or padlock my door.  Either way I’m left to deal with it the best I can; with humor to distract me, or eating candy to numb the pain. Hope this funsize bit of humor does the trick for you.

Twelve Weeks of Special Ed by Lori Miller Fox

School may be on break but here is some humor to prepare for the next term. Ho ho ho....

On the first week of Special Ed the teacher sent to me
A date for an IEP

On the second week of Special Ed the teacher sent to me
Too little help and
A date for an IEP

On the third week of Special Ed the teacher sent to me
Three songs sung
Too little help and
A date for an IEP

On the fourth week of Special Ed the teacher sent to me
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the fifth week of Special Ed the teacher sent to me
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the sixth week of Special Ed the teacher sent to me
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the seventh week of Special Ed the teacher sent to me
Seven mornings sent home
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the eighth week of Special Ed the teacher sent to me
Eight aides, no training
Seven mornings sent home
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the ninth week of Special Ed the teacher sent to me
Nine colored pages
Eight aides, no training
Seven mornings sent home
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the tenth week of Special Ed the teacher sent to me
Ten days of notice
Nine colored pages
Eight aides, no training
Seven mornings sent home
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the eleventh week of Special Ed the teacher sent to me
Eleven empty praises
Ten days of notice
Nine colored pages
Eight aides, no training
Seven mornings sent home
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

On the twelfth week of Special Ed the teacher sent to me
Twelve weeks now wasted
Eleven empty praises
Ten days of notice
Nine colored pages
Eight aides, no training
Seven mornings sent home
Six finger paintings
Five goals unmet
Four cotton balls
Three songs sung
Too little help and
A date for an IEP

IEP Ghoul Statements by Lori Miller Fox

Every year as Halloween approaches, I have to fight the desire to ignore the bell, bolt my door shut, and drown my sorrows in the bags of Milky Ways and M&Ms I pretended to buy for the neurotypical little goblins who pass my way. Personally I find Halloween to be the most painful time for parents of children with special needs, outside of IEP season that is, if only because those otherwise “ordinary” joys of childhood are paraded around right in front of your doorstep. Since crying in my chocolate will only ruin the chocolate, I have no choice but to laugh. So I thought I’d combine the two most painful things for parents of children with special needs – Halloween and IEPs--and share my thoughts on what some mom’s who may actually like Halloween might say at an IEP meeting.

You Know You’ve Been a Parent of a Child with Special Needs Too Long When (Part II)…by Lori Miller Fox

This is the second part of the earlier post to get your new school year off to a humorous start.

You choose your child’s medical specialists by whether or not their waiting room has an accessible outlet for your portable DVD player.

You get pulled over by a police officer and automatically pull out your insurance card.

You volunteer to give blood, not because it’s the right thing to do, but because it’s the only time you can have some peace and quiet and then enjoy an Oreo cookie alone.

You can’t even remember your own name, but can recite your child’s current medications and brief medical history in your sleep.

You call having the time to shave your legs, a makeover.

You stare into the ice cream freezer at the grocery store just a little too long, and don’t give a damn what the neighbors think.

Your accountant just assumes you’ll need an extension on your taxes.

You end up putting Pediasure in your coffee, because that’s all you’ve got.

At night you dream of going on a vacation with Oprah and Gayle.

Locking yourself in the bathroom is considered respite.

You wish you only aged in dog years.

You consider shutting off the room monitor “ a night away.”

You request frequent school meetings just so the staff won’t notice how much weight you’ve gained over time.

Your child’s case manager highlights the AM listings on the TV Guide and calls it a transition plan.

You consider your coffee maker durable medical equipment.

You use the timer on your coffee maker as a snooze alarm.

To you, drinking decaf is considered an alternative lifestyle.

You classify having your child get coughed on by another child in the doctor’s waiting room, as a playdate.

You embroider the number “666” on your child’s t-shirt just so unwelcome strangers don’t come up and “bless” your child.

You Know You’ve Been a Parent of a Child with Special Needs Too Long When (Part I)…by Lori Miller Fox

As freeing as summer can seem while you’re anxiously anticipating its arrival, once into its unstructured midst, a parent can grow weary. The seemingly endless days, followed by the typical sleep-deprived nights, even if interrupted by a smattering of day camp or summer school, can make three months feel like three years. Please don’t misunderstand me, I’m not saying we should all long for the stressful start of the school year; I’m merely granting permission to acknowledge the battle fatigue of the summer. So to all those parents who feel a little “fatigued,” I offer the following validation:

How Many IEP Team Members Does It Take To Change A Light Bulb by Lori Miller Fox

Like for many of you, now that my son’s IEP is over I can finally breathe--even
if only to hyperventilate.

The incredible stress that often leads up to and occurs during an IEP (or Infliction
of Excruciating Pain as I’ve come to call it), can only be “outpained” by the post
traumatic stress that usually follows. There are the  insensitive comments that
linger in our hearts, the raised eyebrows that are burned into our memories, and
the skepticism that sneaks into our unguarded souls. 

Please don’t get me wrong, we have had good, affable and sometimes even surprisingly
pleasant meetings. And of course, there are also those individuals including many school people, who have made a very positive difference in our son’s future. And for those experiences and people, I am extremely grateful.

But for those negative, blind-siding, gut-wrenching meetings, I offer some humor. Because sometimes all we can do to save our sanities, is take a chill pill, maybe along with a mild sedative, and laugh. So here’s a new twist on an old favorite to help get us all through the aftermath of those difficult days. [Feel free to comment with a few of your own].

Communication None-0-1 by Lori Miller Fox

When I was in school, I don’t remember parents and teachers talking very much at all, maybe because it took close to five minutes to dial a seven-digit number on a rotary phone. So communication was pretty minimal: a nod at Open House, a note on the bottom of a report card, an awkward handshake at a Parent-Teacher conference. 

When my son was in grade school, the spiral notebook was the way to “stay informed.” Tucked neatly in his Nike backpack, it carried notes from home to school and  home again. Straight-forward, reliable, easy-to-use, the only complications with this method was legibility, fraying of pages and oh yeah, getting the teacher to read it.

In this day and age with the advent of cell phones, text messaging and instant emails, you’d think communication between parents and schools would be so clear that there’d be nothing left to discuss at an IEP meeting. So why is it that we still don’t understand each other? Here are some possible examples (all fiction, of course).