And the craziest part…
the darn wasp allowed Will to hold it and didn’t sting him and when Will let go…
it flew away!
Not sure who was more relieved,
Russ and I
or
the wasp

Linking up with Tuesday’s Around the World at Communal Global

It wasn’t that the word “autism” wasn’t thrown around by doctors and therapists leading up to Will’s diagnosis, but it was more that it was generally said in this sort of context:
“Will seems to definitely have symptoms consistent with a child on the spectrum, but he also seems to be way too social and his sense-of-humor is also way too appropriate .”

Of course, now I know better.
I know that LOTS of kids on the spectrum are, in fact, social and smiley and giggly and silly.
Just like Will.

But when I look back at old photos I also realize why I didn’t see it, even though I had a clearly “typical” infant in my home at the same time…
Both Emma and Will were preemies and both were diagnosed with cerebral palsy early on, as well as severe reflux, among other things.
We started occupational and physical therapy shortly after the babies turned 3 months old and spent the next year and a half completely focused on their muscles,
which often meant turning my home into a baby gym, full of fun sensory-loaded toys and play things,
perfect for a sensory-seeking baby like Will.

BALL PITS!BUBBLES!
BOUNCING!
And we had SO much more!
Water tables, scooters, shaving cream play, edible playdough, music, dance, swimming, you name it.
Anything to get my little babies up and moving and working their muscles constantly.

And so it seems, my little baby Will’s heightened senses were so perfectly entertained that it wasn’t often that we would even see snippets of telltale symptoms.
(Except, of course, for his “happy hands”)
*Listening to this video, I’m ashamed to realize how uneducated we truly were on the signs and symptoms of autism, because his hands, feet, and facial expressions should’ve been SCREAMING “Will has autism!” but instead, we just didn’t hear it.
Or see it.
(and ACK! My ridiculous totally NJ accent! sheesh!)

And that is still our focus.
Every day.

Joining in with 7 Clown Circus , Lolli and Parenting by Dummies for Wordful Wednesday .
And Twinfatuation for Way Back Whensday.

Linking up with Tuesday’s Around the World at Communal Global

And this is hard to say.
So hard.
Because I don’t want to sound like a horrible mom.
And I don’t want to sound like my son is anything but my whole world.

And sometimes that is my problem.

Will’s world is my world,
my whole world.
And mostly because he has to be.

Everything I do
or don’t do
is for Will.

And sometimes that means avoiding doing so many things that would actually get me out of the house,
with friends,
enjoying myself,
and not worrying about anything but me.
And frankly, I just can’t imagine that.

I can’t imagine someone calling and asking me to bring the kids over and not needing to run through a safety check-list in my head:
where will we be?
how many people will be there?
could Will get out?
are there gates? doors with locks? alarms?
would he have access to anything he could hurt himself with?
will it be too loud?
is there food he can or will eat?
will he be scared?
or worse
will there be people there who won’t or don’t understand?

And most of the time,
it’s just easier
to just
not
go.

It’s easier for Will.
And it’s easier for me.

But it’s lonely.
For me.

Will,
on the other hand,
could mostly care less.
He is content in his own little world;
in his peaceful part of this planet
that it safely geared towards his happiness.

And I suspect, he will always be content.

And I just feel like I’m at a wall that I’m trying to get over and just can’t.
And honestly, I don’t even know what to do when I get to the top because
I know damn well I wouldn’t go over even if I could.
Not without someone shoving me hard.

I have spent 6 1/2 years thinking first of Will
every day.
And I imagine I will spend the rest of my life continuing to do that.
But I know I need to desperately find a median so that I can somehow not feel so lost.

And my heart is broken.

This family is going through unspeakable loss and there are those who truly don’t understand what it means to raise and then lose a child like Mikaela.

Will has gotten out of the house 3 times without us knowing.
THREE times that he was on his own and none of us were there to keep him safe.
He doesn’t know to look both ways before crossing the street.
He doesn’t know not to walk in front of a moving car.
He can’t give our address if someone stops him and asks where he lives.
He wouldn’t even answer his name if he was asked.
And yet, he’s been on his own.
Three times.

Even when I think of it now,
my heart quickens and I am taken right back to the panic I felt.
My sweet, innocent, loving little boy,
my world,
was missing.

But we were lucky,
VERY lucky,
and we found him safe all 3 times.

Mikaela’s family was not so lucky.
And I imagine myself in their place multiple times a day,
every day,
because it is just a matter of time before another little child like her wanders off.
Not if, but when.

And the worst of it,
believe it or not,
isn’t the loss her family is feeling,
but instead it’s the blame that the media has put on her family, who I can assure you, are already beating themselves up, I’m sure wondering what else could they possibly have done to keep her safe.

And that’s the trick of it.
As much as I think Will is like a baby,
he is also SO smart,
and if he wants something badly enough,
he will get it,
he will find a way.

And I spend EVERY SINGLE DAY checking locks,
closing gates,
making sure someone is with him 24/7,
shouting out constantly “where’s Will?”
just so I can be reassured there are eyes watching him.
Always.

He is my world.And I just can not imagine my life without him.

After hearing about Mikaela, I remembered that my friend Carmel is the executive director of Paw Sensitive Pet Service Solutions. She had told me about her company before and for whatever reason, I just hadn’t thought it was for Will.
I finally took a closer look and realized it truly is and what a peace of mind it would give me knowing Will would have a dog trained on his scent, who would keep him tethered when walking, and would keep him safely in his bed while sleeping.
And so we are going to be applying for a dog
to have along with the locks, the gates, the child locator on our keys, and his safety tattoos.
And maybe we will be able to keep him safe…

PLEASE
don’t judge Mikaela’s family.
What they need right now is love, comfort, and peace that passes understanding.
If Mikaela touched her family’s lives in any way close to how Will touches ours,
their loss is suffocating.

Please go to my friend Sunday’s blog, Adventures in Extreme Parenthood, to read other posts by members of the Autism and Special Needs community that are coming together today to honor Mikaela Lynch.

(no William was harmed in the taking of this photo   )