One year later…

Last year at this time, I joined a group of women in the Women’s March in my state.

It was awesome.

The throngs of women, (and men), shoulder to shoulder, singing and walking and talking and sharing, was truly….like nothing I have ever experienced.

It was a cold day in Wisconsin. We were snowflakes, one by one gathering to form a powerful storm.

We shared space. White, black, disabled, Latina, Muslim, LGBTQ, Christian, Jew, young, old…all of the above and everything in between.  We represented the women who came before us. My grandmothers.

We were peaceful.  Laughing. Chanting. Singing. Talking. Listening.

We knew what we were marching for. Equality. Respect. Dignity. Nothing more. Nothing less. Basic rights.

We were empowering. Loving. Advocating. Speaking.

One year later, I still feel the power of that day. And the empowerment.

Tomorrow, I can’t march.  My commitment as a parent is first on the agenda.  I’m splitting that commitment with my husband.

My goal in marching was never to say I am better…or deserve more.  Only equal.  It is disheartening still, to see and hear that that message was lost. Or to read other women’s comments that we didn’t know what we were marching for. Grammatical errors aside, we most certainly did.

Tomorrow evening, a friend and I are going to a local play about Disability Awareness, entitled “Much Like You,” written by Mark’s theater director and students from his high school.  We marched together last year, and both have children with disabilities, for whom we fight regularly.

Not because they are better, or deserve more.  Only equal.

 

 

 

Advertisements

Silver Linings and the Rabbit Hole

Silver lining.

Noun.

“A consoling act of a difficult situation.” (Dictionary.com)

I know I’ve written about the silver lining of my world after I thought it had crumbled when Mark was diagnosed with autism. (This seems like such a melodramatic statement to me now, but it felt that way at the time. And, I’m not gonna lie, traveling this path does still deliver its’ fair share of gut punches to this day.)

What saved me from the rabbit hole then, were the wonderful people I found traveling the same road.

The ones who could say, “Yep, I get that,” when I tried to explain my avoidance of events that I knew would not go well for Mark, often ending in a meltdown. And how simultaneously ashamed, guilty and sad that made me feel.

The ones who, with an enthusiastic, up and down head shake, signaled, “Yep, been there,” when I would retell a story of a Target meltdown, and the judging looks from strangers which followed. And how simultaneously ashamed, guilty and sad that made me feel.

Or the ones who fell back in their chairs and laugh out loud with me, when I shared a story of my neurotypical attempts to explain a literal comment to my extremely literal-minded child.  And how simultaneously ashamed, guilty and sad that made me feel, too.

There are few relationships as important to me as those I have with other parents, yes mostly moms, of autistic children.  (That said, I am so profoundly grateful for the other friends who have truly, lovingly and whole-heartedly sought knowledge and accepted whatever we had to give.)

There is softness in these relationships. A desperately-needed organic acceptance.  The world can be very challenging and cruel, and these relationships have always been my shelter.

I call these people members of the Silver Lining Club.

I had dinner with some members of this club tonight. Steering the family ship when autism is in the mix, also comes with a particular set of challenges; for marriages, for siblings, and for just about every aspect of life.  Advisements of self preservation are thankfully, always an undertone in any Silver Lining Club.  That looks like different things for different scenarios, but I always leave feeling very empowered.

Tonight’s lessons: we don’t owe anyone an explanation for our lives or our choices. What we owe ourselves, is finding peace in our journey.  That does not include ensuring others are comfortable with our stories.

Navigating the world of autism and all that it is, across the spectrum if you will, can be very lonely.  And that feels awful.  My Silver Lining Club members have saved me from the rabbit hole on a number of occasions.  I am honored to walk through this with them.

If you are reading this, and feeling like you are on the edge of the rabbit hole, find your Silver Lining Club.  And if you can’t, I’ll be your first member.

 

Stuck

I know this post is not going to sit well with everyone.  That is not my goal. Nor, is it my goal to appease everyone.

I write when I am moved by an experience.  A good one, or a bad one.  It’s my way of processing.

Recently, I have been sharing stories of my re-entry into the Catholic church. My pleasure in rediscovering it, and rediscovering it to be NOT the stringent, guilt-driven, fire and brimstone church of my youth.  In the back of my mind, I’ve been waiting for the other shoe to drop.

And today it did.  And I’m really disappointed.  And actually, I’m pretty angry.

This weekend the Epiphany is celebrated in the Christian faith.  I read Pope Francis’s remarks on Epiphany which included the following,  ““Instead of conducting themselves in coherence with their own Christian faith, they follow the principles of the world, which lead to satisfying the inclinations toward arrogance, the thirst for power and for riches,” Francis said. He prayed instead that “the world makes progress down the path of justice and peace.”

Today’s homily somehow landed us on a lecture about abortion. The Deacon tried to make a connection between following the “principles of the world,” versus the Christian faith,  and abortion.

I understood the point he was trying to make. Because it is the same point the Church has been trying to make for years.  It is perhaps, my biggest issue with the Catholic church.  I realized that I started exhaling loudly.  Kind of like a bull. In a china shop.

Maybe this isn’t the place for me.

I’ve never had an abortion.  I might not choose an abortion.  But I am in no position to put my spiritual or social judgement on anyone who does.

But beyond that, what was the goal of this homily?  Was it to celebrate the journey of the Three Wisemen to Bethlehem, and the joy they discovered in finding the baby Jesus and his mother?

In my mind, it was more of the old guilt and shame.

I got up and walked out.

I couldn’t feign my acceptance with my attention. I won’t.

I’m kind of sad right now.  I don’t know how to reconcile all of this.  Pro-choice is not always pro-abortion.  Pro-family, is not always anti-choice.  If we are talking in extremes, I suppose they are. I don’t believe reality is about all or nothing.

I desperately wish this Church I have rediscovered would align with my beliefs.   And not only my beliefs, but ideals that I believe are my fundamental human rights. And the fundamental human rights of all women. I don’t believe I should compromise my beliefs to be a part of anything. Church. Social group. What have you.  And I sort of resent the inference that I should. Or must.

So, I’m stuck. Completely, utterly, sadly…stuck. And still, kind of sad.

Warm

It’s a quiet moment for me.  The boys are watching “Band of Brothers” in the room next to me. You know, nothing says holiday spirit like a movie about World War II.

I just spoke to my parents and my family, many states away, and began thinking about Christmases of my childhood.

First memory that popped into my head was of having to wear tights that were HORRIBLE, and the crotch was always down to my knees.  So damn uncomfortable.  For the love of everything, I really hope some tight maker somewhere has remedied that situation, because…talk about a sensory nightmare.  Plus, just not a good look.

Moving on.

We always spent Christmases with my grandparents, splitting the day between my mom’s parents and sisters,  and my dad’s mother and brothers.

Christmas Day started at my Nana Jane and Grandpa’s house, and I remember excitedly anticipating the noise, and the chatter, and the laughter, and the smells, and the mashed potatoes.  Yes. Mashed potatoes. We were greeted with face smooshing hugs. And we would drink ginger ale with dinner, and have tea and pie.  And because I was little, I was always trapped at the side of the table pushed up closest to the wall so I had nowhere to go, and nothing to do but listen.  To aunts, and uncles, and cousins, and whomever sat in that tight space. It was simple.

“These potatoes are cold,” my Nana might have said. My grandfather might make a smart ass comment, and she would shake her head and look appalled as she called him her special term of endearment, “that god damn man.”  And he would raise his eyebrows, and likely make another smart ass comment.

The next stop was my Nana Peg’s.  I loved driving up to her house to see the giant colored lights on her tiny tree in the window. She was always right there at the door, holding the  door open, allowing the smell of cigarette smoke to escape into the cold night air. She smelled like smoke and mint gum.  And her skin was so soft.

We’d sit at the table in the dining room with aunts, uncles, cousins and my great Aunt Bonnie, the nun.  She was Nana’s sister.  They would each have half a glass of wine and giggle.  There was an olive tray.  And I don’t mean fancy olives. No. Black olives. Green olives. And some dill pickles.  I love a good olive tray. Nana made ice box cake. She would open the window in the kitchen to smoke.  There was coffee. The phone on the wall would ring, and it was some family member pretending to be “The Wizard.” (I was well into my thirties before I discovered that the Wizard was actually someone I knew.) And as we drove away, Nana stood in the doorway waving as the glass on her door frosted up.

These memories feel like so long ago, and I guess they weren’t exactly recent.  Just thinking about them today has made my belly warm.  Memories I wish every person had the joy of experiencing.

I can’t write “Wishing you and yours that warm belly feeling” on a Christmas card, but I can write it here.

Wishing you and yours a warm belly feeling.

xo

 

 

 

The Nevers

Unknown-1

My mind has been racing, my brain has been on fire as I try to write the story of today.

Today Mark learned that he didn’t get a lead role in the musical.   I need to point out two things about this. First, he worked so hard this year with singing and dance lessons. He got a call back.  His voice makes me cry.  It is full of love and joy. He LOVES theater and song, like in his soul. Second, the competition is fierce. I mean, this is a seriously talented group of kids. There is a reason this high school’s theater company wins state competitions year after year.

Fourteen years ago today, Mark was diagnosed with an Autism Spectrum Disorder.

Then, we were given so many NEVERS.  He would NEVER express empathy. He would NEVER express love for another.  He would NEVER have relationships with peers.

I cried that day.  I cried for days afterwards. I didn’t know what the future would hold. I wanted so much for him. I’ve cried on random days along the way, because it’s just been hard, or kids have been mean, or schools have been…um…challenging.

Mark came home today and posted on social media.

I have spent the last 45 minutes trying to capture that post, while blocking out names. I am not so media savvy, so I will just post what he said here:

“I didn’t get the results I was hoping for.  Congratulations X and X for getting Tiernan. Also Congratulations X,X, X and X for getting Donal, Dubdarha and Bingham. Also congratulations to X and X for getting Grania. And X and X for getting Elizabeth. I’m proud of you.”

Pretty graceful.  Pretty compassionate.  Pretty opposite of the NEVERS.

I was so sad for him. He worked so hard.

And then the responses from his peers:

“You worked extremely hard, which means so much more than getting a part. You’re an amazing young man and I’m honored to share the stage with such a kind and talented heart.”

“My dear friend…I’ve been working with you since Middle School and have witnessed every terrific show you’ve played a part of.  Not many people have impressed me with as much talent as you have, and I am so lucky to get to share the stage and a friendship with you. I can’t wait for the next few months for us, love you man.”

Pretty amazing feedback from peers. Pretty amazing friends. Pretty opposite of the NEVERS.

And as I was thinking of ways to calm Mark from his heart wrenching disappointment, I thought…we’ve outdone the NEVERS.

It wasn’t about getting a part in a play. It was about getting a part in life.  With people who recognized a heart, a talent or a spirit.

That day 14 years ago, I think that’s all I wanted for Mark. A part in life.  With people who appreciate him and the amazing person who he is.

And the NEVERS?  Someone should rephrase.

 

 

 

December

IMG_1721

Dear Mark,

On December 22, 2003, you were diagnosed with Autism Spectrum Disorder.

We weren’t surprised. In fact, we were somewhat relieved to have a name for the behaviors we saw in you  But we had NO idea, and I do mean NO IDEA, what autism meant across the life span.

The pediatric neuropsychologist was very clinical.  I can still hear the words she said:

“He might never speak well enough to get his needs met.”
“He will probably  never have relationships with peers.”
“You might never hear him say, I love you.”

The last one I remember very distinctly. Mostly because I spent the next months on the end of your bed after you were asleep, saying, I love you . Hoping somehow you would pick it up.  And I would cry. You probably don’t remember.

I don’t regret my grieving for your “typical” development.  The future was terrifying then.  Though you were only three, we were constantly being told to plan for the future.  For the days when your behavior looked SO different from that of typically developing children.  For puberty. For the lack of self sustaining employment or independent living, which could result in your living with us forever.  And for the days beyond forever, when we weren’t here.  Who would take care of you?

Our first Christmas after your diagnosis was basically chaos. You weren’t interested in presents, or family parties. You ran around in circles repeating the same words.  I remember going to Nana Peg’s house and thankfully she had a long hallway, because you just ran back and forth all afternoon. I wish I had a clue that you were overwhelmed.  That you were just trying to manage everything as a tiny three year old.  We just had no clue.

Christmas has always been the time of year we, or maybe just I, remember all of this. Autism diagnosis and Christmas are forever bound together for me.

I have always believed in my kids.  Autism, ADHD…whatever.   I tell them they can be anything they want to be.  That the right future is there for them, but they might have to walk through a lot of crap to get there.

Accessing a Free and Appropriate Public Education is a battle.  Accessing appropriate therapies, is a battle.  Accessing employment and independent living opportunities, is a battle.

But I always try to focus on your talents and the things you love, and how they will open doors for you. Level the playing field.

One of your loves has always been music.

From your early fascination with Baby Einstein, to your love of Bach (after whom your therapy dog was named,) and your ongoing love of Broadway music and musicals.

I’m biased.  But you are a fantastic singer.  You are passionate about it. You work hard at it because you love it.

Tonight I sat in my seat watching you perform with your peers, and with your elite high school choir group.  And I don’t mean just a stand and deliver kind of performance.  Your joy was pure.  I saw you rocking out.

And damn, you’re  good.

I could hear your bass/tenor voice above the rest. Emotional, engaged, and passionate.

And I thought of all the things we were told you wouldn’t do.

It was hard to tell if I was crying, or if I simply had acute allergies. You decide. 🙂

Dear Mark –

You can do anything. Because you are you. And that’s all that you need to be.

I love you so much, and am so proud of you.

Forever,

Mom

P.S. Thankfully, I am the worst iPhone editor ever and no faces can be seen in this shot.

 

No Perspective

So, I’m sitting here looking at that blinking cursor again.

Blink on, blink off. Blink on, blink off.

It’s oddly calming as I try to process the events of the day, and take them from the jumbled up mess of incredulity in my mind, to the reality of computer screen.

I sat in a meeting today about my son.  I was told that assault is about perception; it could simply be that of a teen boy goofing around.  Further, if said boy was not seeking sexual gratification, though his demonstrative actions could be construed as sexual, it was not sexual assault.

Read that again.

Here’s what I took away as I was turning 11 shades of purple.

Assault is about perspective.

No.

Assault is NOT about perspective.  It is about asserting dominance. And power. And humiliation.

If a teen boy, or any boy for that matter, is thrusting his pelvis at another person and it is labeled “goofing around,” we have just provided a rationale for assault. And an excuse for a person’s deviant behavior.

Further, if you’re kid is doing this, he’s not being goofy.  He’s being an asshole.

Which led me to an inevitable reflection on the rash of men accused of assault, harassment and sexual assault lately.

Society hasn’t done them any favors, or ourselves any favors, by permitting their behavior.  They have destroyed lives, and ultimately destroyed their own lives and careers.

We have to stop this.  We have to stop ignoring this behavior. We have to stop empowering this behavior. We have to stop electing this behavior.

We cannot change the big picture, if we don’t start confronting the smaller pictures.  In our communities, in our neighborhoods, and yes, in our schools.

And we can’t start soon enough.

 

 

 

 

 

Dear Congressman

Dear Congressman –

You know me.  You’ve been in my home.  You’ve met my family.  You’ve listened quite intently to our journey with autism.

With all due respect, and I do mean that, I thought I was clear.

Cuts to medicaid….bad.

Cuts to community and home based services…bad.

Cuts to employers who hire people with disabilities…bad.

Cuts to healthcare, which could literally (not figuratively) be a disabled person’s life line….bad.

But then you voted for the original health care bill in the House, which was bad for my family.

But THEN, you voted to extend funding for CHIP, which was good for my family.

But THEEEEENNNNN, you voted for this tax reform bill, which was super bad for my family.

So, I’m confused.   And again, I mean this with not the least bit of sarcasm, and because you know me a bit you might know that doesn’t happen often, but what gives?

Have I not made my case?  Because if that’s it, let’s talk. We can talk numbers, and I can tell you how this tax reform bill strips away hopes of an independent future for my autistic son.

Are there not enough people telling you how important your votes are?  Because if that’s it, tell me and I will rally the troops and your phone won’t stop ringing. We’ll bring you cookies and we can talk numbers and tell you how this tax reform bill strips away hopes of  an independent future for us as individuals with disabilities, or our loved ones with disabilities.

I believe you are a good person.  You’ve asked really good questions. But the budget decisions we make are a direct reflection of our societal priorities.  Voting in support of this tax reform legislation, tells me exactly where you stand.

To say I’m disappointed would be an understatement.  I’m actually sort of sick about it.

And I really  hope you will vote differently when you see this bill again.

With great respect,

Your Constituent

 

 

Bullying – the Sequel

Below is my testimony to my city’s Board of Education regarding our experiences with bullying.  It’s time to fix this nonsense.

“My name is XXXXXX. I am here to talk about bullying in our school district. And I’d like to share with you the story of my son, when he was twelve.

My son E has ADHD and Anxiety disorder. He has always had a 504 plan, until this summer when he received an IEP for anxiety. I will discuss that a bit later.

Upon entering Middle School, E was excited. He had a small group of friends with similar interests. The first quarter of seventh grade was great. He was receiving good grades and was involved socially.

Second quarter, things started to slide. E started struggling in math. He had accommodations on his 504 which were not being upheld by the math teacher. We sought counseling services, which we maintained through 7th grade. She began calling him out in class, saying things like “that was so easy E, you should be able to do that like the rest of the class…” He was embarrassed. He started finding KYS (Kill Your Self) written on his math notebook, every day. We spoke to the school staff. They asked for witnesses, we provided them. Students began calling E a faggot and a baby. He failed math.

We then asked that E be switched to a different math teacher, and the school accommodated our request. But the damage had been done. The students continued to berate E in school and on the bus, challenging the size of his genitals and continuing to call him a faggot. I began to drive E to and from school.

We reported every incident to the school.

In April, a student brought some sort of knife to school. It was a small knife. Regardless, E was nervous. He reported it to the principal. As he should have. He did this with two other students. These two other students told other kids that E ratted out the boy with the knife.

He went to school the next day and was taunted and humiliated by students in his grade.

That was the last day E attended Middle School.

My 12 year old wanted to kill himself. Every day he said he wished he were dead.

 

We sought emergency care from E’s psychiatrist who wrote a letter to the school indicating that the school was no longer an appropriate place for E to learn. I pulled him immediately and began home schooling. We convened an emergency meeting with the school staff and special education services to begin home bound schooling.

Over the summer we convened an IEP meeting to determine special education services and secured them as a result of E’s anxiety. As a special education advocate, I can say we have an excellent IEP. I was hopeful. The team agreed E could not return to Middle School. Thankfully, he was admitted to Another Public Middle School

E was nervous but hopeful about the new school year. APMS offered more classes he was interested in, like video game design, and allowed longer class periods for homework completion, which reduced his anxiety.

The first day of school, E was called a faggot and hip checked into a locker.
In the first weeks of school, there were assigned seats at lunch. Once assigned seats were removed, E sat alone at lunch.

We reported all of these incidents to the school.

He has been called a faggot, a retard or stupid almost every day. He has been shoved against lockers on numerous occasions.

This has all been reported.

 

 

I am here tonight because I’m done.

It is unacceptable to me that my son had to leave a school because he was bullied relentlessly, by a teacher and by students.

It is unacceptable to me that there is a school culture which tolerates both.

It is unacceptable to me that bullies go unpunished.

The district has a bullying policy which has clearly not been upheld. The policy says “Bullying behavior is prohibited in all schools, buildings, properties, educational environments as well as on any school grounds or school busses.”

All of the behavior I have described above would be defined by the district bullying policy, as bullying.

In it’s failure to address the bullying my son has faced, the district has done nothing but empower bullying. A message has been sent to the bullies that they will get away with it. A message has been sent to the victims, that they don’t matter.

I know we are  better than this.

I have told you our story. In doing so, it cannot be said that the district is unaware of a bullying issue. I urge you to take what I have shared with you and let it sink in that a

12 year old boy wanted to commit suicide last year because of relentless bullying in this school district.

I assure you, he is not the only one.

 

I am begging you to address bullying in this school district immediately.

At this point, our experience has exceeded bullying, and has entered the realm of harassment.”

 

Telling His Story – Part Two

Chapter Four – Summer 2015

Five months later, summer. Whew! After a depressing five months, summer vacation was finally here.  However, there was a downside to this. Yes, I did make regular visits to the pool and I did go to Lions Camp, but since I was only at Middle School for five months, I didn’t know it then, but I was about to go through “Fail A Class and your Diploma is Mine” stuff. Yep. You know exactly what I’m talking about.  High School.

I also sent a letter to the Walt Disney Company to reissue one of their most underrated movies, Hercules in 3D, and they still haven’t responded to my letter.

On Cape Cod that August (yes, my family goes to Cape Cod which is on the hook of Massachusetts), I found out that Disney movies were playing at my local movie theater. There was The Little Mermaid, 101 Dalmatians, Tangled and The Jungle Book.  I wanted to invite someone to see that.

 

Chapter Five – Freshman Year

You know how I mentioned earlier that eight grade wasn’t off to a very good start? Well, freshman year wasn’t off to a very good start, either.  I kept sobbing and saying how badly I wanted to go back to Connecticut. I did invite someone to see 101 Dalmations at the movies. He was one of those eighth graders that gave me a standing ovation after Peter Pan.  But I cancelled it because I had family obligations.  Okay, here’s the part where I mention my grades first semester freshman year.  My grades weren’t that good.  I had an F in science first semester, but I got a C second semester.  But I still have to make it up because I need three credits of science to graduate. It’s not hard to see why. I tended to shut down during class, and there was a lot of math, and high school level math, I’m not very good at. I was in another musical, which was The Little Mermaid. I was in the chorus as a sailor, and  a balloon fish in another cast (My school splits the shows in to two casts so more people can participate.)

 

Chapter Six – Sophomore Year

Now, sophomore year was different for me than both eighth and ninth grades. I had only one C, and that was in Math.  My teachers also said very good things about me. I was involved, yet again, in my school’s musical, The Hunchback of Notre Dame.  My school was the first in the country to get rights to perform it.  It wasn’t the Disney version, no it was the original Victor Hugo version, where Esmerelda the gypsy girl, dies at the end. Later that year, I planned a social outing for the first time. It was with three other friends from drama to see a show outside my school (my school has very critically acclaimed productions) for the first time. It was a production of Shrek: The Musical, Jr. and it was pretty good for being a middle school production. All of these people I knew from Middle School drama.  At the end of sophomore year I had two Cs and a mix of As and Bs.

 

Well, that’s my story of how I moved to Wisconsin, how hard that was for me, and how I turned it around.

I hope you took something away from that.