Pressure.

(Spoken while sitting in a support group for children with Asperger's Syndrome)

"I cried at McDonald's last week."

"I've just been so stressed out...being at home...all day...with our 6 year old."

"Man, do not get me wrong I love my son to pieces...but sometimes it just feels as if we are living on an island with a bunch of weird rules that do not apply to anyone else...."

"The thinking and thinking...I worry about everything, Is this going to set him off?...should I take a different road to avoid the barking dog?...Everything."
"And, the pressure...man, the pressure. It is always there....and sometimes it feels like you can't breathe, you know?"

(This is a paraphrased scene from the Television series Parenthood)

(Watch in it's entirety here, or fast forward to minute 12 and watch this one minute scene)

I watched this scene alone in my room and cried.And cried. And cried.

 I wondered how the writers had been able to open up my brain and take out those deeply hidden and heavily masqueraded thoughts. 

The ones I rarely share.

The ones that sound really terrible, and pathetic and incur all sorts of interesting judgmental responses...unless you've been there.

And... if you have been there...you listen to a scene like this...and you nod your head.

You nod your head with so much energy that you get dizzy.

You nod your head, and you cry.

Because it's real.

And it feels good to know that real is okay.

Deak hates reverse.

He hates it in a major way.

Most days, if he feels the car going in reverse, he immediately begins with a small and than gradually increased (depending on the length of time) screaming fit.

Do not even THINK about attempting to reverse twice in a row.

It's just one of those things we do now; we attempt to only drive forward, for fear of tantrum.

Deak likes buttons on toys, and generally has to have a toy with some sort of sound-making button available at.all.times and in.all.places.

At church, at school, at the bank, during soccer games...etc. etc.
It's what we do.

Deak refuses to place his cup on the table while eating a meal.

Can he?

YES.

Does he choose to?

NO.

He chooses to chuck his cup across the room when he is done drinking it for that moment, and then typically proceeds to sign "more" or scream for it again two minutes later.

Discipline is different with him; at times it is just survival of the fittest, and Deak's voice can out scream the hell out of mine any day.
So, we pick up the cup 476 times a day.
It's what we do.

These are a few of our "rules."

...Just a few...

And, I know with all of my heart, that it could be worse.

I am also very respectfully aware of the fact that the proportion of awesomeness in regards to Deak's behaviors is totally incomparable in relation to our difficulties.

But, man...Do I worry about following these rules, and keeping the peace and making sure I am doing all that I should be doing to help Deak reach his full potential in life?

Ummm, yep.
Every.single.second of every.single.day.

That's pressure.

So Much Freaking Pressure.

Sometimes I feel the pressure so strongly that I literally feel as if my brain will explode if I do not do something right this second to make Deakon's life better.

I've felt like a piece of crap parent in the therapy department lately.

Deak has had years and years (okay four) of therapy.

All sorts:  Occupational, Physical and Speech.

They have been fantastic, and much needed, and very helpful in many ways.
But, seriously...the list of therapies Deak has not been involved in far outweighs what I have done for him.
There's equine, and aquatic, and sensory-processing and even ABA to help with social skills.
Lots and lots of parents do lots and lots more.
Man, I wish I could.

I have had some help from my mother in law transporting Deak to some of these therapies in the past year, due to my work schedule, and have appreciated her help more than words can say.
But, I have still not forgiven myself for accepting it.

The pressure says it needs to be me there, and if I'm not, I am a failure.

I know, the pressure sucks.

During the past few months we have had to cut down on Deak's therapy schedule because the therapists at Shriner's Hospital (whom I cannot give enough praise to) schedule their appointments during school hours, and Deak is in school half of each day now.  It just hasn't worked...with the exception of speech.

I have beat and beat myself up over this...not knowing how to fit in all of Deak's endless possible therapies with a full time work schedule and, heaven forbid, another child's activity schedule.

But...he is so close.

So close to walking...and I need to feel like I'm doing everything in my power to make this process happen for him.

I contacted a private physical therapist through an outpatient Primary Children's Hospital facility today, and Deak is scheduled in two weeks.

I called Blair to let him know and he paused, "Jen...do you really want to add this to your schedule?"

My response, "I can't take my brain anymore if I don't to something to help him. I can.not.take it."

He was supportive, yet cautious, completely aware that this adventure I was taking he and Deak on was not cheap.

But, he knew I was barely breathing.

And, for the record, I am nearly certain that I too, have cried at McDonald's.
And Arby's.
And probably Wendy's.
(We eat a lot of Fast Food).