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.

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“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.”

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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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Looks like we’ve made it…

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cheersAutism Awareness month has come to an end and I cannot be happier.  I just wasn’t up to it this year.  I was busy being aware of my own child’s needs.

Sometimes you just can’t champion everything, you know?

Sometimes you just have to step back and say “maybe next time”.

We’re on to May.  My favorite month.  Our shared birthday is in May.  My mom is visiting.  I’m going to be in Listen to Your Mother.

I like May. It makes me smile.

Something else that makes me smile?  Welcoming my second blog.  www.debbytorres.com

Everybody’s Boy is not going anywhere.  I just thought that there were certain posts that needed their own home.  Posts not specific to parenting or Autism, mostly.  So going forward those posts will live at the new blog.  You can follow that blog on Facebook as well.  The Facebook Page is also where I’ll share updates on publications, speaking engagements, press stuff.  So if you want to keep up with my work go here and click “like” (I’ll wait).

Oh hi, you’re back.  Now, I hope you’ll take the time to read today’s post.  It’s one I hold dear to my heart.

I posted tonight about my upcoming birthday.  The big 3-5.  I hope you’ll check out the new place (still needs some touch up paint and a few pictures on the walls but we’ll get there).  Have a seat on the folding chairs in the dining room and grab a slice of cold pizza from on top of the pile of boxes. I’m still unpacking. But it already feels like my second home.

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.