Non-inclusive Inclusion

“I’d like to thank the students in X Classroom for folding the programs. And I’d like to thank the students who work with our special education students.”

That’s what he said. After the end of the year school performance.  He said it.

I listened to this as my son, in special education, had just crushed a solo from a Broadway show and had received a standing ovation. I also listened, as everyone in the school knew X Classroom and who is there.

I was stunned.   Enraged. I watched Mark on stage, knowing he understood his label of special education, and wondering how much it hurt him to think that his peers needed thanks for being with him.

I looked around to see if anyone shared my shock.

Nope. Audience was clapping away. Patting themselves on the back for being inclusive, was all I could think.

And yes, I realize my snark here.  But I really feel like people in my realm should know better.

The pushback is always, “this was coming from a good place.”  Which is true, and something I appreciate.  But it’s also coming from a place of outdated perspective, and self-proclaimed understanding. And most importantly, a misguided understanding of inclusive education.

Have I been explaining it wrong? If that’s the case, what can I do?

Inclusion is not a place. It’s not a classroom from which you draw inspiration.

Inclusion is not sympathetically hanging out with someone at certain events, and then not inviting them to your lunch table.

Inclusion is not temporary. Or momentary. Or charitable.

It is a lifestyle.

It is a moment taken to recognize a person’s heart, skill or talent.

It is a moment taken to share an interest.

It is a moment taken to recognize common interest, and rights to pursuing that interest.

Inclusion is fairness, and equality, and shared acceptance.

So how do we do better?

I can’t summarize a happy little essay because it requires so much more thought and discussion.  I’d like to know who is in?

~ Kate

 

 

 

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It’s Ok but it’s hard

Just a quick note to my people.

I see you.

It’s the end of your kid’s senior year in high school.

Your kid should be graduating age wise, but is not.  Your kid should be going to Prom, but is not.  Your kid should be working a summer job, and hanging out, but is not.

I see you.

We are going to be ok.  We will figure it out.

What we don’t figure out, we will identify and  correct.

Please know that we are all here.  Watching the milestones go by.  Grieving for them, but celebrating our own victories.   In the way they are achieved.

I am freaking out, Silently and otherwise. Carry on. xo

Kate

The Mothers Who Made Me

I have had the tremendous fortune of being born to MY mother.

We listened to Simon & Garfunkel, and the Mamas and the Papas, and Free To Be You and Me.  I remember her telling me very early on, that I could be whatever I wanted to be. And I remember believing it.

I still do.

When I reported that boys picked on me at recess, she told me to “kick ’em in the shins.” Sound advice.

Over the years, I became a horrible teenager.  Brooding and defiant.  Melodramatic and rebellious.  (Though in fairness, a 10 p.m. curfew was totally ridiculous.) I was mouthy and opinionated.  I really don’t know how she survived me.  I am not really sure how I survived me. But we did.

My mom went to college as a commuter. She drove there with several other students, along a highway, in a car with no floor in the back seat.  She watched the roadway flash by beneath her. Once she got to campus, she had no idea how she would get back home., but she went anyway.

In a time of women not necessarily being afforded the opportunity to achieve their potential, my mother was knocking down doors just by being present.

I come from a line of women like this.

My grandmother Jane, who took care of her sick mother, and three children (plus her brothers and sisters) while her husband was at war. She began painting and recreating impressionist artworks in her 60s.  She would not tolerate her tea if it was not hot, with the appropriate ratio of milk to sugar.   If I close my eyes, I can hear her saying, “I’ve never HEARD such a thing…”

My grandmother Peg, widowed at a young age.  She visited us in our new home when I was in middle school. Some boys sat behind me, snapping my newly found bra.  Nana whipped around and told them what was up. Never happened again. She worked, smoked, went to the casino.  She did what she needed to do. She drove a Chevy Nova, and chewed spearmint gum. If I concentrate, I can smell all of it.

I have had the great fortune of being from these women, and being surrounded by aunts and great aunts who have promoted the qualities of mothers. Subtly, or not.

Teachers

Care Givers

Faith Servers

Counselors

Advisors

Celebrators

Advocators

I salute all the women who have played these roles.  You are all mothers, and women who I hold very dear. You have shaped me into the woman I am today.

I can be assertive.

I can be stubborn.

I can have a lot to say

I do not condone bad tea.

I believe anyone can be anything they chose, and I will continue to fight tooth and nail for that to happen.  As the mothers before me did, just by being present.

Happy Mother’s Day to all the moms, grandmothers, aunts,  and mothers-in-law

 

~Kate

 

 

 

 

 

 

 

 

 

The Autism You Don’t Hear About

EDITOR’S NOTE: in order to do justice to the mission of raising awareness and acceptance for people with autism, we must take a hard look at all points of the spectrum, and we must do so without judgement of choices or parent criticism. Anyone who is brave enough to share the darkest days, in order to bring about change, deserves respect, attention and our action   Stories like my friend Darlene’s deserve to be heard. Thank you for this guest post, Darlene

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

I’m standing in the middle of the kitchen, egg yolk dripping from the computer screen, a chair overturned, puddles of water and coffee on the floor.  I can still hear the screaming from upstairs. But the storm has passed and I start to cleanup.
I have trouble putting these thoughts on paper for so many reasons. These outbursts don’t define who Ben is or how our family works.  My reaction is to cleanup and quickly move on- writing it down would preserve it too long and then it becomes part of our family narrative.  But today weighs heavy.  It’s only 9:30 on Good Friday and I feel like we’ve lived a day and a half already. 
I made egg sandwiches- bread, melted cheese, bacon, fried eggs. I gave Ben his sandwich first, then assembled Lila’s, our 12 year old daughter.  Most of the time, it all goes fine.  Ben uses his iPad to communicate thru a voice output app.  At almost-18 years old, he can’t talk.  I realize this may sound strange to people but 1/3 of all people with autism remain nonverbal their whole lives.  Ben uses his iPad to ask for pizza.  No its breakfast, I’m making eggs.  He nods yes.  He can say “Ba”, sometimes “Na” or “Ga”.  “Ba” gets louder and louder and I explain over and over that it has to cook. He needs to wait. This will continue for every meal for the duration of the cooking, every day.  I direct him to the family room to watch TV or look thru a book (a picture book because Ben can’t read). He leafs thru the picture book about the ocean, fish and dolphins, his favorites since elementary school.
As I put his breakfast on the table, I don’t notice how fast he is shoveling it in his mouth until he gags, then swallows hard. I notice his eyes- wild and his hands and body are rigid and tense.  He is spiraling unable to control this impulsive brain as he screams and bolts across the table to grab his sister’s breakfast.  She and I respond together yelling “NO!”. He is reaching and grabbing and screaming and at 6’1” , 240 lbs, we need to get out of his way.  I salvage 1/2 the sandwich and help Lila out to the back porch keeping my body between Ben and Lila’s food.  He is relentless but we are quick, I close the slider door and she is safe.  
I send Ben to his room not knowing if he understands the punishment, he is angry, screaming but finally walks upstairs to his room.  Later, he strokes my arm, his version of “I’m sorry”.
This impulsive behavior around food, even when he has just eaten and is full, is so unpredictable.  We keep a lock on our refrigerator so he doesn’t drop a jar on the ground and eat around the broken glass. In the past, he has crunched on glass.
Because we have the autism you don’t usually hear about, when we speak about our family’s journey we are met with varying responses…
Those close to us will say “he must be upset we are visiting, upsetting his schedule”. Nope.
Recently an educator who should have known better implied Ben would be able to talk if she had gotten to him earlier.  Thanks.
The autism community admonishes us for not appreciating the gifts and unique qualities of this autism.  Sigh.
We don’t know why he didn’t respond to the same interventions that helped others talk. Why do some kids learn to talk while others cannot? The list of interventions we tried and continue to try are too numerous to list.  But sometimes autism just unfolds.
Because he is also intellectually disabled he is served by DDS (Department of Developmental Services)  In 3 years, when he turns 21, he will begin vocational work in day programs for those with IDD.  Aren’t we lucky? After all, many people with autism don’t qualify for DDS because they have a high IQ.  
Except those programs were never set up with autism in mind.  Sensory friendly lighting? Limited background noise?  Separate areas to compose oneself in a safe, calm area? The basic autism friendly adjustments are all but nonexistent.  How can they expect success? How will this decrease behaviors? Answer: “Your behaviors are not a good fit for our program” is the party line.  
Sheltered workshops are closing or closed.  Although the chief objection to sheltered workshops is financial exploitation, wage-earning is not the primary purpose of many of these ventures. Importantly, workshop compensation typically represents just a small fraction of the benefits conferred on the disabled individual: the full support package may include Social Security Income (which can be reduced as wages increase), Medicaid-funded supports, in-home assistance, residential care, behavioral support, respite, recreation, and other therapeutic services. This does not even include the money paid to workshops for providing training and supervision in safe, structured environments – necessary structural fees that often dwarf the compensation paid directly to participants.
Without vocational options, a future of isolation is inevitable.  I have no choice but to tell our story and try to create a better future for Ben.
A lawyer-friend of mine with a son similar to Ben also tries to create a better world for her son.  She received this message on Facebook:
“I’m sick of looking at your feed and being told not to use the word retarded. I’m sick of being told I have to hire retarded people and spend my tax money to educate them. Doesn’t it make more sense to educate normals kids, they’re the ones who make a difference in the world and grow up and make money and have families of their own. That is what matters. How about poor kids who don’t get educated, who is a lawyer for them. At least a normal poor kid can grow up and be something with an education. Im sick of hearing that you have a retarded son, get OVER IT. Life is tough for everyone and I don’t feel sorry for you. Be a lawyer for people who really need it not for people who don’t even know you are helping them.”
No wonder you don’t often hear about our type of autism.  It’s too hard to handle the day-to-day challenges, the isolation, the pushback from others with autism, and people who believe that social services shouldn’t be wasted on our type of kids. 
With the future barreling at us like a meteor, I am in a massive hurry to create something for Ben for when he turns 21.  It seems an impossible task. I need help.  I appreciate The World According to Eleanor, for sharing our story. We need a movement to help us but this is a start. 
 
 

On the 5,588th day, she rested a little.

5,588 days.

That’s how many days have passed since Mark was diagnosed with autism.  (I don’t carry this information around with me, there’s actually a website which calculates these things and I was curious.)

There is not a website which calculates the number of IEP meetings, dollars spent, sleepless nights, or tears shed.  I’m going to keep it real here.  Mark is not a burden. The flaming rings of bureaucracy, apathy and ignorance through which we as parents of those with special needs are made to jump, are.  I do not want sympathy, but I do think the absurd levels of patience, persistence and perseverance necessary for navigating this journey, is a story which deserves to be told and heard.

From the time Mark was a little boy, he unequivocally said he wanted to go to college.  College choice varied over the years, based on proximity to amusement parks, Disney, zoos or the ocean. This goal has never, ever been in question.

If you are a parent of a student with special needs, you know that I am watering this down with the amount of water in the Pacific Ocean. You know, things just don’t magically happen because they SHOULD. Sometimes they do, but most of the time it’s us. Pushing.  Staying up late to research laws or effective treatments. Educating. Advocating. Humanizing. Making a big stink. We are the parent, the coach, the lawyer, the teacher, the worrier, the counselor and the unrelenting warrior.

That’s my job.  My child is worth all of it.

But I’m kinda tired.  OK. I’m bone-tired.  Ok, I’m like can’t-get-out-of-bed exhausted.

So despite predictions, Mark was accepted to four colleges.  Over the last several months, I have researched the hell out of accommodation options.  I’ve observed the climate of inclusion on these campuses.  I’ve sat with Mark to prepare him for interviews, and made sure he knew the accommodations afforded to him on his IEP, so that he could advocate for those same accommodations when meeting with Campus Disability Services.

And over the past few weeks, our school district has worked with us to brainstorm a path for him. One which supports him on the college level, as he is afforded under federal law.  Today, we nailed down which college would be a fit for Mark’s goals, while setting him up to succeed.

Autism is an ever-changing experience.  What works today, might not work tomorrow.

I’m choosing to celebrate what we have found today.  If it’s a moment that’s fine.  I’m going to put my feet up for a bit.  I’m going to relish Mark’s accomplishments.  I’m going to pat myself on the back, yes….yes, I am.  We’ve all worked really hard for this. Family, friends, teachers, therapists, brothers, and Mark.

For 5, 588 days.

TYM

The tall young man, whom I had known since he was 8, looked down at me and said,”Have you met Miss X and her son?  Her son reminds me of a young Mark.  I understand so much about him because of Mark.”

Pure fact.

Mark and the tall, young man (TYM) have been buddies for a long time.  One of the first of few solo play dates that Mark had, was at TYM’s house in third grade.  Social relationships are really hard for dudes like Mark, and we found this to particularly be the case in his younger years.  Social relationships are hard for kids as they approach the dreaded teen years. Did they hang out every weekend, go to parties and talk about sports all the time? No.  But they have always had their own brand of friendship, which took me some time to realize.

And here’s my point.  We see so much of what is called “Inspiration Porn.” These are stories along the lines of “Football Star Goes To Prom with Girl in Wheelchair,” or “Teen with Autism Voted Prom King.”  Take out the disability, and there is really no story. Ableism.

It’s important that TYM sees his relationship with Mark as something from which he benefits as well. That having a friend like Mark, has enriched his world to the point that he can understand someone else’s life.

For us, an inclusive public education setting has been key to fostering any relationship. The only way children can learn that differences are a fact of life is by exposure. And I mean ANY child, because for Mark…almost everyone was different than he.  It’s important that children learn to navigate these relationships at an early age, and then learn how to foster their own brand of friendship.  It should be organic.  Kids like Mark are not charity. They are not part of the school for neurotypical peers to learn about disability.  His job is not to assimilate to the typical world. Everyone is in school to learn.  Friendships are a two-way street.

This might sound very PollyAnna.  Which is certainly not my intent  It is also important to recognize that all students learn differently, and are comfortable in different learning settings. I’m writing this at a fork in a very long road, and like childbirth, the benefit of forgetting a lot of the really painful parts.

Mark said his goodbyes at the party, and left for the car.  I mean, once you say good bye, there really is no need for loitering. TYM said, “Mark and I need to hang out. I’ll text him.”  I smiled.

TYM would text him. Not me.  As it should be.

 

 

 

I’m sorry, but I’m not. I got caught.

Dear friends –

I have made a million mistakes in my life. Things I knew were wrong. Underage drinking. Making fun of people. Skipping classes. Smoking cigarettes. I won them.

In high school, I remember getting caught with ONE beer between four of us.  My parents were livid. I launched into a speech about how it was unfair that the drinking age was higher than the age to sign up for the military.  It was a stretch. I knew better. But I had been caught, so I was looking for a way out. And then I was sorry.  And then I was grounded for one million days.

I am really not sure what has happened to our society, but it seems to become one of which if you say you are SORRY, you can not be grounded.  Adults.  Breaking major laws, or creating major offenses.  Elected to public office.

As an 18 year old I owned my mistakes. It is amazing to be that grown men, cannot seem to do that. And further lay blame elsewhere.

I was not raised like that.  You make a mistake and own it.  You accept the consequences. You move on, going about the cause of rebuilding trust.

From the Virginia leadership, to the White House, to the Congress, to communities everywhere…no one is owning up.

As such, you are an ineffective leader.  You inspire doubt. Disappointment.  Despair.

I’m tired of the excuses. The “Oh, I didn’t mean to offend,” and the “Oh, I didn’t know it was offensive.”

Many communities like mine are bubbles.  We don’t have a lot of minorities, nor do we have a lot of minority perspectives. Our kids just carry on without a thought.

This thoughtlessness is not an exemption. It is a teaching moment.  A big one.  I volunteer to help.

Our kids need our help right now. Rather than let them flail in a “kids will be kids” way, let’s teach them the road.  How not to be a jerk.  Words that are not respectful or funny.

What we change now, impacts the politicians of tomorrow.

I hope to hear less of, “I’m sorry, but…..”

 

 

Today was a good day

So, today Mark was accepted to college. And given an academic scholarship.

I’m just going to to let you all sit with that for a moment.

If you’ve known me EVER, you know that I plugged my ears about “The Great Beyond” (After HighSchool) for as long as I could. It was too overwhelming. But rarely do I allow myself the luxury of denial.  So instead, I just stay up all night researching and thinking about it.  Just me?

But there we were, in Mark’s senior year, confronted with the reality that we have to do SOMETHING about “The Great Beyond.”  I’ll now refer to this as TGB.

Now, Mark has ALWAYS said he wanted to go to college. Since grammar school, this has been his plan. He has been consistent and insistent that this was his trajectory.

Meanwhile, Robert and I knew it could be done, but hadn’t the slightest clue as to how.

When Mark was first diagnosed with autism, we were told that he might not speak.  Might never be able to understand social situations.  I told him that through my tears today, and he chuckled.  At dinner, Robert told us all to raise a glass to toast Mark, and Mark literally raised his glass off the table and put it down.  And then laughed again.

When Mark was transitioning to Middle School, we were told that he couldn’t take Spanish because, “Kids like Mark, didn’t take a foreign language.” She said this without even knowing that he loved languages, and thrived learning them.

We hired a lawyer.  He took Spanish.  And thrived.

We moved to another district. Same thing. “Kids like Mark struggle enough with English, they don’t need a foreign language.” Without knowing him.

We filed complaints.  He took Spanish and earned honors.

Mark being accepted to college was a great accomplishment period.  It is also a way to put naysayers in their place.  It was a great reminder, that goals are attainable and individual.  That no one should generalize anyone’s potential.

Thank you all for your love and support.  Thank you for cheering us on.

Today is a good day.

-Kate

This election is personal.

When President Trump was elected in 2016, I sat at the kitchen table with my son on November 9th, as he cried. I will never forget that day, as he wept that the President of the United States hated him, because he made fun of people with disabilities. Such as autism. Mark is autistic.

Shortly after the election, and with the appointment of Betsy DeVos, 72 critical documents for special education students were rescinded from the Offices of Special Education and Rehabilitative Services (OSERS).

There has been, and will be, a push from the conservative right on the state level, to reject medicaid expansion dollars, the biggest recipients of which are those with disabilities. Medicaid supports special education programs in schools, and in the community.

In addition, another push from the conservative right to privatize schools for students with special education needs. This means for-profit educational facilities, with perhaps no training, who are allowed to operate outside of the federal laws written to protect students in special education. Their means to creating these for profit educational facilities, is to cut public education funding and/or special education funding.

Similarly, there has been and will be a push from the conservative right, to eliminate Social Security, or what they refer to as Entitlement Programs. SSI is how the majority of the disability population live. And I don’t mean an entitled life of vacations to Europe, and jet setting to private islands. I mean LIVE. As in, eat. Survive.

And why is this such a dire scenario, you might ask? 85% of people with disabilities are unemployed, or underemployed. Because there are few states (ok, almost none) which have prioritized finding ways to employ, this very employable population.

So really? They have been left with little choice. And then they are penalized basically, for being disabled.

As a mother, to a young man with potential to do and be so many things, elections are personal.

This is my son.

This is my family. His success determines our family’s success. It determines whether or not his brothers will have to take care of him, and to what degree.

I fear the next steps for us, and for him. If this administration is allowed to continue to do nothing to support him, while cutting any meager programs that do…

So, naturally, I look at the candidates who do not support this administration.

And while I hate to generalize, I am forced to. Because there are only two political parties in this country; the one of the current administration, and the Democratic party. (This is not to say that there are not some Republicans who don’t support 45, but I just can’t vote for them.)

Believe it or not, I have not always voted straight Dem. But tomorrow I will. Because I cannot risk electing legislators who will systematically work to destroy the rights of my family.

This election is personal.

Michael Jackson. Hiding at concerts. And allergies.

My allergies were on fire tonight.  And by allergies, I mean the kind of allergies which are a result of something awesome my kids did.  They are not tied to pollen or mold levels.   At all.

Recently, Erv texted me to ask if he could hang out with friends after school. If you’ve followed his journey of bullying, this was huge. Allergies.

Cornelius, upon being the final out at the championship little league baseball game, said that he was thankful that he got to play one more game past the regular season. Allergies.

Tonight, Mark rocked out on the stage with his peers, singing “Man In the Mirror.” Allergies.

Let’s back up a bit.

I walked in to the high school theater for Mark’s choir recital tonight and sat in almost the last row.  These events make me very tense.  I know he’s in his element, but I am always on guard for anxiety-driven behaviors, or signs that he is being shunned by peers.  Both happen.

Please don’t be offended, it’s not that I don’t want to talk to other parents.  I’m just so nervous, I can’t make small talk.  So, I choose to sit by myself. Also, this doesn’t mean, don’t say hello.  It’s me, not you. 🙂

That said, I sat in the back row tonight and watched Mark sing joyfully.  And passionately.  With rhythm, and expression.  Organic expression, inspired by music.

People.

I would just like to say again, and I know I say it often, this was the kid who we were told would not emote, or go to school with typical peers, or even speak beyond rote expression.

And there he was, up on the stage with his peers, emoting. And singing.  And loving it all. It is truly remarkable.

And I sat in the back row reliving his diagnosis.  And the hope we were denied. And then my allergies kicked in. And, well, that was pretty  much my night.

And “Man In the Mirror.” Could there be a more perfect song to narrate this evening?

Nothing is forever, unless it’s hope.

Change is possible, particularly in regard to perspective.

Each of us affects change.  In attitude, in accepting differences, in living outside our comfort zones.

“Take a look at yourself, and make that..change.”

Hope in the possibilities.  Presume competence. And all of that. But I’ll see you in the last row, anyway.