Category Archives: Community

Chosen: First Grade Politics

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earlyMathThere is a post I’ve meant to write for a while.  A post that I have written probably fifty times in my head.  A post that I hate to write, because it hurts so badly.

It’s not just about Autism, this post.  Though it’s a lot about Autism.  Things are always a lot about Autism here.

This post is more universal than that.  This post is about parenting and feeling loss for your child.

“My heart has a virus.  It is squeezing it shut and making my brain feel angry and sad.”

My son said those words to me today.

“I do not have a friend.”

…and then those words.

And then my heart had a virus, too.

I don’t remember a lot about the first grade, but I do remember having a best friend.  Her name was Lori and I couldn’t pronounce the letter “L” very well so I called here “Rori”.

Best friends, it seems, are all the rage in the first grade.

And Everybody’s Boy doesn’t have one.

There is one child that he is particularly drawn to.  I would say enthusiastically, but with “enthusiasm” such as he has for Sonic the Hedgehog or Mega Man.

His mission is to make this boy his Best Friend.  No game overs allowed.

But this boy has a best friend (and much like politics one’s six year old allegiance can only rest with one friend) and my son is not the one.

A few weeks ago he expressed jealousy at the “chosen” kid.  I found myself in uncharted territory as this was a new feeling for him.  I talked about how Mommy has lots of friends and that some of Mommy’s friends were “like best friends” but that it’s okay to have more than one friend.

But as it turns out, it is not even remotely okay.  First grade = one singular best friend.

As he tried to win this child over, and for whatever reason (I was not physically present for any of this) the boy became increasingly frustrated with EB.

The boy told him that he was his BFN, “Best Friend Never” and that he didn’t want to come to his birthday party.

My little boy was devastated but determined.  He kept devising plans on how to win this child’s interest, much like one of the video games he so adores.

So Gus and I talked to him together.  We suggested some other friends he could play with.  But apparently they were each already paired up, a mathematical pattern that left him odd man out.

Last week EB came home sobbing over this friend issue, trying to wrap his head around emotions that he had just become aware of.  Why couldn’t he win the best friend he wanted?  Why didn’t this kid like him?

All I could think was, why doesn’t this kid like him?  How could this kid not like him?

In one of my not finer moments, I became really pissed off with a six year old.

How dare he reject my son?  How dare he hurt his feelings by saying these things?

My precious son, who has a disability, a disability that affects him socially.  What kind of bully is this kid?

But really, if I’m honest with myself, that’s awfully heavy for a first grader.  He doesn’t like EB.  I hate that.  He said some hurtful things.  I hate that too.  But this child can’t possibly recognize the extent of his actions.

I suggested that next time EB’s feelings were hurt that he tell him “That hurt my feelings.”

And so he did…only he screamed it while fighting his aide to get to the boy and it evolved into an epic meltdown on a field trip with the whole first grade.  I wasn’t there, but just hearing about it made me wince in agony.

Gus and I talked to him again.  We suggested he take a break from pursing this boy.

And it sucked because he kept asking things all weekend like “Will my <not-best-friend> break be over before my birthday party?” but I thought it was gonna be okay.  We had a plan to build relationships with a few other kids in the class with his amazing teachers and I had hope it was going to be okay.

But it wasn’t okay. It’s not okay.  He spent the majority of yesterday inconsolable at school, unable to leave his self-contained classroom, perseverating on the fact that he was “on a break” from this boy.

Every morning he writes a goal to work on.  His goal for yesterday was “Make a New Friend”.

Ouch.

Finally the virus attacked his heart so very much that his loving teacher and principal took him outside to yell until it was better.

And it was for a little while. It was while we played computer and Sonic and ate Papa John’s pizza.  It was as we watched our TV shows and as he fell asleep cuddled next to me.

But In an hour I have to put him back on the bus, and send him back to the mysterious world of first grade where it’s all or nothing.  He has the awareness that he’s not fitting in.  He just doesn’t understand why.

I don’t understand why either so how can I help him to process that?

He’ll go to school today, his schedule will be greatly scaled back, expectations limited, so as not to add more stress and we will all begin to rebuild.  Cause that’s how it goes.  We fall apart and rebuild.

But this is okay.

I’ll keep telling him it’s okay.  That he doesn’t have to be part of a pair. That Daddy and I are his best friends.

And it will be okay again.  But then it won’t be.  Because the gift that is my child gaining social awareness is also the most excruciating loss of innocence.

And we’ll fall apart and rebuild again and again.

And in the meantime I’ll keep searching the first grade for his plus one.

Forget-me-not

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photoFor Heather

Once upon a time in a land 14,000 miles from home a young maiden sat lonely and lost adjusting to her new, albeit temporary, home.  The mail came but it was slow. There was email but it wasn’t the same and this maiden should note that with a 9 hour time difference it too was painfully slow.

One day, amongst the magazine subscriptions and Old Navy orders, a small package arrived.  It was from the kingdom of Florida, the maiden’s fair home.  The small package included a handwritten letter from the maiden’s bosom friend and a packet of forget-me-not seeds.

In case anyone thought I might have become proficient in creative writing, that’s the end of the fairy tale.

But I assure you, it’s only the beginning of the story.

I found my soul mate as a child, in my best friend Heather. We planned to live side by side and marry Doublemint twins and to have our children at the same time and grow old together in the kingdom of Florida by the Gulf of Mexico.

As life would have it, that was not in the cards for us, but despite time and distance Heather has remained the central character in my fairy tale.  She knew me like no other has ever and though we haven’t seen each other in years, and our conversations are limited to (maybe) monthly Facebook exchanges, I would place a gamble that she still does.

Our lives are busy these days and vastly different from what we’d ever imagined.

Though only 500 miles separate us now, it seems farther than ever.

But she’s not so far away, because she is home.  And home is never ever as far away as one thinks.

I had my gardener plant those forget-me-nots right near the front door of my palace in that far away kingdom.  They grew, these seeds totally not indigenous to that land.  They grew, I believe, because they were home and home was in me.

Every day when I stepped outside those forget-me-nots were there, reminding me that in another hemisphere far away, home awaited. Reminding me that home could grow anywhere if I would just cultivate it.

Home knew me, loved me, intrinsically, just like Heather. Home was still there. I still belonged to somewhere.  I had roots.

Heather’s small gesture had an incredibly profound impact on my life.

I’ve done my best to recreate myself over the years – to be anyone but that girl I was at home – because I wanted to be more, because more was better.

Yet in those times that I had torn myself apart and rebuilt I had forgotten that the essential ingredient in completing me, was home.

Without a foundation, roots, a history, I cannot grow.  Without acknowledging who I was I cannot appreciate who I am.

The thing is, I like who I am.  I like the life I have built.  But only because the foundation was started long before I realized it.  The foundation was started at home. No matter how many times I rebuild, the foundation has settled.

In a few days our family will celebrate five years in North Carolina.  I have never loved living anywhere more than I do here.  It’s the only home my son can remember, it’s the home our family is building.  Here will be his kingdom by the Gulf.  Here will be where his roots are.  That makes me proud.

It’s been five years since I’ve been home.  It feels like an eternity sometimes.  It feels like I don’t even know that place anymore.  I know it’s changed.  I know I’ve changed.

I’ve been planning a trip to visit this summer.  It’s a chance to connect physically with the self-recognition that has been bubbling up inside of me.  To be in that space again.  To visit the girl who lives deep down inside.  To apologize for snubbing her, and for not giving her credit for paving my way, to summon her to the surface again and let her experience now and guide me in experiencing then.  

Because the two really aren’t that different.

I need to tell her that I’m sorry I got so caught up in now that I forgot her.

I bought some forget-me-not seeds, a trowel and some soil today.  I planted them in front of my door.  I know they will grow, even in this strange kingdom here, because they are home and home is in me.

And when I see them I will remember how much I owe Heather for that little package that profoundly changed my life way back when….and again today.

By Trade

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typewriters ”There is nothing to writing. All you do is sit down at a typewriter and bleed.” Ernest Hemingway

When I lived abroad I used to tell people I met that I was “a writer by trade”.  I had absolutely no idea what that meant.  Truth be told, I still have no idea what that means.  It sounded legit and most of the time I got a pass because no one else knew what it meant either.  On the odd occasion that someone asked me what I wrote I simply dumped a glass of wine on my dress and made an emergent escape.

This is probably why I still prefer white wine.

I took me many more years to begin writing consistently.  Yet somehow I have reached a point in my life where I don’t immediately feel that dumping a glass of wine on myself is required when someone asks me what I write.

My son gave me voice and mothering gave me my muse.

Writing is not easy.  As Hemingway so truthfully stated,  the experience is nothing short of sitting down and allowing yourself to bleed words.  Good writers have within them a space vulnerable and exposed, and in that space and only that space can they create genius.

I don’t pretend to have created genius but I have created truth, which for me is close enough.

For as hard as it is to pour ones heart out on paper, it is far preferable than actually saying the words aloud.

My close friends know that I am a better communicator when I write.  If something is particularly emotional for me we are all better served if I just sit down and send an email, or at the very least process my thoughts in writing before having a conversation.

My husband has received hundreds of emails from me over the course of our marriage.  He’s come to accept that there are things I simply cannot say face to face.

Sometimes writers have to be speakers.  It’s just the way it works.  I speak in public all the time for work and am generally nonplussed by this.

But sharing my writing out loud, is akin to standing exposed to the entire world, like one of those underwear dreams you had in high school when final exams were approaching.

In an effort to continuously push myself to grow, I showed up to school in my underwear last night.

In January, I submitted a piece to the Listen to Your Mother Show, a nationwide casting call for essayists hoping to share a little piece of their heart on a really big stage around Mother’s Day.

I wasn’t terribly surprised to get a call to audition.  Not because I’m all that and a bag of chips, but because the piece was one that I felt was quality – ergo there was lots of bleeding involved.

What I was surprised about is how raw and exposed I felt preparing for my audition.

I spent hours taping myself reading, watching it and wincing, reworking sentences that worked beautifully on paper to have spoken meaning, and judging rhythm and flow and intonation.  It was a new experience and a lot more than simply reading something I wrote.

I spent a good part of yesterday practicing how to say raison d’etre without sounding like a pretentious hipster.

Last night I drove to Raleigh, at a time I would typically be going to bed, and as I sat downstairs waiting for my turn to read I could not find a position that allowed my legs respite from violently knocking against one another. I tried to whisper through my essay a few more times. I checked my cell phone for encouraging texts and Facebook messages from friends every few seconds and then…

I turned of my phone, closed my eyes, and chanted silently “Right now, in this moment, all is well.”

Then I went upstairs to the studio and bled my story.

It wasn’t all that different from writing after all.  It’s still about vulnerability and braveness, and truth.

Whether I am cast in the May 8th show or not, and get to bleed on a giant stage in front of lots of people, I am proud that I can now say that I am a writer,

and I am a speaker.

Thank you to the amazing producers of LTYM Raleigh-Durham, KeAnne and Marty for making this experience so comfortable and meaningful.

You Keep Using That Word: Five “R” Words You Should Use to Describe People with Disabilities

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3rkln7You keep using that word.  I do not think it means what you think it means.

“This is retarded!”, protests an exasperated student in my son’s Karate class.  She doesn’t want to do the six count ground drill again.

“Stop that!  You look like a retard!”, scolds a grandmotherly-like woman in frozen foods department at Target.

I bite my tongue.  I probably shouldn’t, but I do.  Maybe I’m scared of confrontation.  Maybe I’m tired of being an educator.

Maybe I just don’t want it to be my problem today.

Certain words have become part of American culture, and the “r-word” is one of them.

I’m a big fan of freedom of speech.  I studied journalism.  I am proud to have my blog as a forum to share my opinions – in whatever way they might differ from the norm, or from yours’, or from anyone’s.  It’s my right.

As much as it pains me to say this, it’s your right to use the word retarded as a slur as well.

It’s just that if you knew, I don’t think you’d want to use it.

re·tard (Dictionary.com, 3/5/13)

verb (used with object)
1.to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
verb (used without object)

2.to be delayed.
noun
3.a slowing down, diminution, or hindrance, as in a machine.
Once professionals attached the diagnosis of “mentally retarded” to people with cognitive disabilities.  Today that term is by and large obsolete – instead replaced with intellectual disability or cognitive disability.
We still hear it from the older generation sometimes when describing their loved one with an intellectual disability.  They don’t mean anything bad by it – it’s just how they were taught – habits are hard to break.
I wonder how and why this word became a slur.  How did it come to imply that someone or something is “stupid” or “without value”?
I have friends who have an intellectual disability, who once were deemed “mentally retarded” by medical professionals.
I assure you, my friends are not stupid and that they are every bit as much of value to this world as you and I.
I can also assure you that they would never call you, or anyone else, a retard.
Maybe that’s because they don’t have the luxury of “not letting it be their problem” like I did that day in Target.
In honor of the Special Olympics “Spread the Word to End the Word Day” I’m providing five other “R” words you might want to use to describe people who are “differently-abled” instead.
Resilient:  Imagine being told you can’t over and over again.  Imagine getting told no countless times, at times by people who think they know best for you, people who are trying to protect you.  Now imagine doing what you believe in anyway.  Think about how much mojo that takes.
Resourceful:  Do you have any idea what it’s like to have to plan where you are going to go to dinner, or what museum to visit, or what job to apply for based on the wheelchair accessibility of the building, the street, the transportation?  Do you know what it’s like to have a world of knowledge to share but be unable to speak?  Do you know what it’s like to want to say “I want to be your friend?” but you cannot control your body and mind to put together those words in a societally-acceptable way and instead are forced to resort to scripting a television show and flapping your arms.
Respectful:  If you were judged every day by your appearance, by your IQ score, by your quirks or struggles you’d probably be more inclined to give someone a pass based on “first impressions”.  People with developmental or intellectual disabilities are judged by the way they move, the way they speak, the way they look or interact – constantly – so they know to be respectful of the differences of others.
Regular:  Yes, that’s right.  People with disabilities are just like you and I.  They are regular people.  They are sometimes funny and sometimes not.  They are sometimes amicable and sometimes grouchy.  They are sometimes helpful and sometimes present an obstacle.  Just like you.  Just like me.
Ready:  People with disabilities are ready to engaged in friendship with you, to share their time and talents, to give back to their community.  If they haven’t made an attempt, maybe it’s because they haven’t been asked.  Maybe it’s because we’ve told them that they can’t for so very long that they finally accepted that we don’t believe in them.
Just like everyone else people with disabilities are regular people, capable of giving respect and worthy of receiving it, and have the resilience and the resourcefulness to appreciate that we as humans are flawed.  When we are ready to do the same, they will embrace us – without a doubt – and forgive our insensitivity and childishness.
Because they know we really didn’t know what that word meant.
And now we do.  So let’s do better.
Maya Angelou – “When you know better you do better.”