Author Archives: Debby

About Debby

Mommy, Writer, Diplomat, Advocate, Gephyrophobiac, Gumball Hoarder, "Sarcastic Quotation Mark User", Frenglish Hablarer, Veg*n, Zen Seeker, Media Earner

The gift of love

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He is seven.

Everybody’s boy is seven today.

Yesterday afternoon was hard.  He was very agitated and impulsive.  Something was wrong and I knew what it was.  I wasn’t sure he could place his finger on it though.

“Peter, is today a tricky day?”

“I am scared to be seven. I do not want to be old.”

Just what I thought it was.

So we talked.  We talked about how it’s my birthday too and that I’m 35 and that thirty-five is 7 times five.  That I am FIVE times older than him.

After that he was not scared anymore.  Of course the conversation sent me spiraling into my own mini mid-life crisis, but I was due for one of those anyway. It had been almost 10 days since the last one.

On Wednesday evening I read a piece as part of the cast of Listen to Your Mother Raleigh-Durham.  It was entitled “Almost Six, and it was a timely reminder of how fast life moves, how precious and universal the loss we mothers feel as our children grow bigger and bigger, more and more independent.

At almost seven, I saw so many times pure empathy and love from my child.

A few weeks ago we went to a local “fun-place”,  The kind where you spend $130 in less than two hours and walk out with another stuffed animal, but notably the most expensive stuffed animal ever.

I’m going to cut that thing open and get the diamonds that must be hiding inside of it out next time he puts it down.

But it was fun.  So fun.  Such a great Mommy and Son day.

When “shopping” with his tickets at the counter he poured over his options for probably twenty minutes.  I cannot mind this trait as I am the most indecisive and -second-guessing shopper ever,  He eventually chose the diamond-packed dinosaur.  You can keep your tickets on account which is what he usually does so I reminded him that we could save up for the iPad he wants, not at all ready to explain that at $130 per visit and an average of 900 tickets won each time.  That iPad would cost over $34,000.

Plus he totally already has an iPad.

Instead of saving for the diamond-encrusted iPad.  He decided to look some more.  Then he asked me what I liked.

“Me?  I don’t know.  I like that Hello Kitty keyboard. But that’s why I am not choosing YOUR prize.”

He chose the Hello Kitty keyboard.

Okay, I thought.  It was a steal at only 900 tickets/$130.

In the car as we headed towards home he asked me who we knew that liked Hello Kitty.

“Hmm…well my friend Emily likes Hello Kitty and I think maybe your friend Morgan does too.  Why?”

“I am just thinking about this Hello Kitty keyboard, Mommy.  Okay?  I am thinking.”

Buyers remorse?

We stopped by grandma and grandpas house.  He ran in the house and whispered – not at all secretively – that he got Mommy’s birthday present and it was a Hello Kitty keyboard.

Here is the part where I tell you that from the moment he “bought” it, I knew.  But it didn’t make it any less special when he rushed home and asked me for wrapping paper and a GREEN bow and then hid away in his room while he conducted his covert operation.

Or when he hid it in his toy box and told me that there was a present there for someone but I could not know because it was a secret.  Or when he told everyone that came into our home over the past two weeks and showed them proudly.

Or when he brought it out and proudly showed his friends, and one of them said when he went back inside to replace it in the toy box.  ”Peter’s Mom, don’t you know that present is for you?  You are sitting right here, you heard him right?”

I grinned at her and said,  ”Oh yes, I do know.  But he doesn’t know that I know so don’t tell him okay?  He wants to surprise me.”

A few days later we were driving again and he said “What are you getting me for my birthday?”

“Dude, I gave you life.”, I joked.

“Life, life, life – every year it’s life.  I want something else this year. I want the gift of love.”

God he’s adorable.

So I got a box.  I put the Mega Man stuffed toy I had purchased for him on Amazon in it…and last night I cut out probably 100 red construction paper hearts.

And I wrote on them, Mommy loves Peter.

This morning Daddy and I woke him up by singing Happy Birthday.

He jumped out of bed.  ”It’s our birthday, Mommy!”

He ran to the toy box.  And presented me with this.

mommysbirthdaysuprise

“The green bow is because green is your favorite color.  Open it, Mommy.  It’s your birthday.”

I was actually surprised at how surprised I was.  I gushed and cried and told him how sneaky he was and how sweet it was of him to think of the perfect gift for me.

I am using it right now; as you would expect.

Then I gave him his gift.

“It’s a Mega Man plush!  Oh I love it, Mommy!  Oh and look at all these hearts!  Mommy, you made these for me?  You gave me the gift of love!  Thank you, Mommy.”

giftoflove

 

Actually, my darling son, you gave me the gift of love.

Happy 7th Birthday, Everybody’s Boy.

Cinco de Mayo: Diagnosis Day

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2010_01_25_five_candles_5x7A lot can happen in five years.

I can gain and lose the same 50 pounds twice.

I can write 209 blog posts.

A child with no words can become the child talking graphic design with the adults working at the local comic book store.

416 private Occupational Therapy sessions.

454 private Speech Therapy sessions.

3,600 Special Education school hours.
- 160 in-school Speech Therapy sessions
- 180 in-school Occupational Therapy sessions

104 private Behavioral Therapy sessions.

54 weeks of TEACCH, structured teaching.

Specialized gymnastics, social groups, summer camp, music therapy, adaptive swimming, baseball, soccer and basketball.

In case you are wondering, it’s diagnosis day here.  Five years ago today a psychologist told our family that we had a beautiful son who also had Autism.

So we got to work.  Grandma, Grandpa, Mommy, Daddy – but most importantly Peter.

I remember pining for the day I’d hear the word Mommy.

I still have to stop myself from signing “all done” or “thank you” on the odd occasion I have to prompt for those things.

A friend of mine who has an adult son with Autism told me once that it doesn’t get easier, it gets different.

Lots of professionals have told us that our child is profoundly affected  by Autism, despite the fact that he is extremely “high functioning“.

And as much as I didn’t want to believe them, as much as my analytical mind struggled to reconcile the concept, they are right.

He struggles.

We struggle.

But he works hard.  He works harder to quiet his mind and focus on a task for five minutes than most of us do in a whole day.

And he works hard because he wants to.

He wants to learn.  He wants to calm himself.  He wants to be a friend.

If I could change things, make his life easier, I would take his pain in a second.  But I also cannot imagine a world without this Peter.  This eccentric and eager child endears himself to the world effortlessly.  This child will succeed where I have failed.  This child will change the world in ways unimaginable.  This child has fight and spirit and Autism is not his handicap.

Five years ago I sat in this very room at my computer and sobbed because I did not know what the future held for my son.

Today I sit at the computer, still not knowing what the future holds for my son, but with a quiet heart.  Because I know that whatever it is – it will be okay.  Because I know that he won’t stop working and neither will we.

Because I celebrate his uniqueness.  Because he is my super-hero.

Because if he can do this in five years, the next 15 are going to blow you away.

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The View From Here

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photoI just looked outside and I could have sworn it was raining.  That first “warm day” rain that comes rolling in with thunder and sometimes (though not so often here in Carolina) brilliant lightning. I even heard the thunder. It’s not raining though.  I opened the window to make sure.  The thunder was the city bus, the rain an illusion of dusk.  I wanted to feel the heavy air and stand outside and let the fat supple raindrops whisk me back to the days before – before I was aware.  I wanted to smell the ozone and watch the neon river of pollen meander its way towards the storm drain.  I wanted to experience a simple and predictable act of nature.

But it’s not raining. The view from here deceived me.  My mind cobbled together an expectation left unfilled.

It looked like it was raining.  It sounded like it was raining.  It smelled like it was raining.  It was not raining.

Everything about our experience with Autism is tainted by illusion.

So I guess this is my 2013 Autism Awareness post.

My son is perfect. It’s his Autism that is unpredictable and complex. I look at my son and I see empathy, passion, and potential.

They say he’s “high functioning”.  I abhor that distinction.  Clinically it means he isn’t cognitively delayed.  That’s all.  No one knows that.  Everyone thinks it means he has a “mild case”, or that he’s not as “affected”.  ”Is he high functioning? Oh thank goodness!” – I cannot tell you how often I hear that.  Or how tired I am of explaining that it’s still hard.  It’s just a different kind of hard.

But don’t let me distort the view from where you are sitting.

I spent yesterday morning running to work and then to the school for a crisis meeting with the school psychologist and EB’s teacher.

He’s falling apart.  Rapidly.  His behavior is aggressive and volatile – he is a threat to himself, his classmates and the staff. He might not be able to stay in his school if this continues.

My son is in crisis.  I cannot even bring myself to write some of the behaviors that he is exhibiting.  I want to protect him with my words, because I don’t want you to think that list of behaviors is him.  That list is not my son.  My son is amazing, but my son is fighting a war – a war within himself.

He’s not functioning right now.  High or otherwise.

Looks are deceiving.  Labels are dangerous.

My son is high functioning enough:

  • to know he is different;
  • to want a friend;
  • to have complex thoughts that he cannot articulate, that he cannot understand, that cause him great fear and anxiety;
  • to feel rejection;
  • to feel anger and fear;
  • to know what he needs to do, but not know how to do it when he is sad/frustrated/angry/scared/excited;
  • to want to make the people in his life happy, and to feel like a failure when he loses control;
  • to beg me to make his brain go away, or to have it be nice to him, or to tell me he wishes he were dead…

There is nothing like seeing your six year old child so distraught and scared and confused by the way his mind and body work (or don’t work) that he wants to die.

I hope you never have that view.

Tomorrow we have an emergency appointment with his developmental pediatrician. We are in crisis.  We will have to stabilize.  I imagine that will include a higher class of drugs; the scary drugs.  But we have to do this.  Because if we don’t, the future is certain.

I believe that the scary meds will help us find our way to the other side.

And I know that this cycle will continue to repeat itself.  For years to come.

Today was exceptional.  Today he held it together for the entire school day.  He helped me bake cupcakes and decorate for a surprise party for a friend.

Today gave me hope.

The hope fuels the fight, but it also clouds the view –  because when things are good it’s hard to remember that my child is still a child in crisis, and the thunder is still the city bus, and the raindrops never came to wash away the pollen.

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.