best. vacation. EVER.

We've taken our kids on many vacations. MANY!

They've skied in three states. Screamed at amusement parks. Camped in National Parks.  Museums and road side attractions. Stood at the edge of the Grand Canyon and at the base of the Statue of Liberty.

They've been out of the country.  They've been on cruise ships, boats, planes, and trains. Road trips too numerous to list. "Are we there YET?"

But last weekend's vacation was different.

Not because a record setting heatwave was sweeping through the western United States and we were in Palm Springs. Expected high of 120. We've had our share of weather issues over the years - snow, rain, heat. No problem.

As we were heading home Saturday this happened:

Me: This was the best vacation in... I can't remember how long.
Anthony: You have got to be kidding.
Justin: She means because we didn't fight. It was my favorite, too.

We didn't go anywhere spectacular. Just the hotel pool and a few hours at the waterpark. But there were no meltdowns. No fights. Despite the heat and the sunburns. Not one.

What there was, was Anthony laughing. A dogpile on the hotel bed. Eric in the wave pool. And that moment... when Justin "got it".

It wasn't that long ago...

I vividly remember sitting in a rental car outside of Orlando while my 10 year old screeched at the top of his lungs for 2 hours because the Space Shuttle launch we were supposed to see had been scrubbed.

Just 2 years ago, Aaron bolted from a Mexican restaurant in Phoenix.

Photos of Justin crying uncontrollably in San Clemente. And San Diego. And...

Aaron, who won't go to the movies. Who wants to leave when he wants to leave - even if we just got there.  Who doesn't deal with surprise or plan deviations or impromptu well. Who expects chicken strips or macaroni and cheese nearly every meal. Who can throw a tantrum to rival any three year old. Except he's almost 14.

I suggest them. I plan them. I collect lists of amazing places to see and things to do.  We talk about them for weeks leading up to them. But still, after years of disappointments and yelling, I've come to dread family vacations. It's just one way parenting two special kids has changed me. 

The stress before.  The chaos during.  The guilt after.

Over the years, we've altered our destination choices and the length we're away based on what Aaron and Justin can deal with and, really, how much of THEM I can handle.  But, this weekend was different and it is a reminder that, on some level, it IS getting better.

Not perfect. But better.

I have no photos or souvenirs from this trip. Nothing to scrapbook. Just the memories. And that's ok.

it's not you, it's me

Sometimes I have to take a friend-cation.  Not a getaway with my bests (I do that, too) but a brief break from the people around me.

I do it for my own sanity. And to make sure that my friends stay my friends.

Over the years, I've gotten pretty good at holding my tongue.  Keeping my inner voice silent. Most of the time at least.

So why take a break if I have it under control?

Because sometimes it is more than I can handle and I feel myself losing that inner battle. But it's (rarely) you that is the reason for the hiatus - it's generally me.  My jealousy. My inadequacies. My issues.

So I walk away.  I stop reading texts and posts. I find myself unavailable for lunches and outings. I just take a break.

Deep down, I am happy that your child is doing well in school and life. But honestly, it's hard to calmly sit back while you complain about your son having a B or your minor annoyances.  SAT scores, colleges, awards.  Those constant reminders of how much we struggle at home is sometimes more than I can handle. It is a reminder of our loss, our frustrations, our pain. 
 
I know you don't mean it maliciously or as a slap in the face.  It's not a competition - I know that - but it still hurts.  My insecurities.

So although I don't expect you to understand what we go through at home, I hope you understand why sometimes I just don't want to go to lunch and listen to how great your life is.  I want you to stay my friend and I'm afraid the inner voice will come out.

It's just a vacation not a permanent split.  Please understand, it's not you... it's me.

every day

I knew he was different when he was two.

I remember the first Christmas. The shopping cart he was so excited about.  Not for the cart per se but for what came inside.  We woke up early Christmas morning to find him at the end of a long trail of boxes.  All neatly lined up.  The shopping cart on its side while he spun the wheels round and round.

I remember not being able to communicate with him.  He had his own language - his own way of seeing the world.  Hands over his ears shielding him from loud noises - eyes covered against bright lights. Being told by the school district that the problem was on my end - that my child was brilliant; that I just needed to learn how to understand him.

I remember sitting in the car while he screamed at the top of his lungs for what seemed like an eternity. Strangers walking past looking at me as if I had beaten my child. Knowing that the only thing that would stop him was sheer exhaustion. I felt helpless and frustrated.

There were days that I felt like the worst mother in the entire world.  Days that he would tell you I was. Days that I would sit in my car alone and uncontrollably cry. So many years later, we still have days like that. Too many.

There were times along the road that I asked myself how I would ever get through this.  Begged G-d for understanding. For patience. Those times are not behind me.  They are my every day.

Some things haven't changed in the past 14 years.  I still often feel helpless and the level of frustration has only increased with age. Gone are the boxes of fake food, and although we talk, we still do not communicate. There is still a great deal of screaming. Frustrated, angry screaming that leaves us both emotionally and physically drained.

I remember the parent-teacher conferences, year after year after year, where we were told that our child was smart (testing showed that) but not engaged.  "He zones out... he's not present... he sleeps through my class."  Classwork wasn't done.  Homework was a battle. Grades fell. Comments from both sides of the table, "We know he can do better." Fingers pointed both directions.

I remember each 504 and IEP. Psychologists and specialists and support groups. Diagnoses and medications and therapies. Parenting classes and books.  Explaining to yet another doctor, teacher, friend, family member, and parent.

I also remember the first time he told a joke. Sitting next to him the first time he watched a fireworks show without his ears or eyes covered. The feeling of picking him up from summer camp last year (the first time without a family member). Watching him lead his peers at Boy Scouts or mentor a younger scout. When he left me in a theater to go sit with his friends - people who accepted him and welcomed him.  These are the everyday.

But then there are also the everyday battles over homework and responsibility. The constant reminders that he lacks reason and the ability to differentiate right from wrong. The same concerns over hygiene and personal safety we had when he was little. Worrying about what the future will hold for him. For us.  Every day.

And, I often wonder how much has REALLY changed in 14 years.

The school district was right - he is smart and I do not understand him. And THAT, more than anything else, leaves me feeling frustrated, helpless. And sad.

Every day is Autism Awareness Day