Just Another Day In The Life

Once upon a time, there was a lady who learned a lesson on the gangway of a cruise ship in The Bahamas about what disability looks like.  Let's hope the lesson she learned that day stays with her for the rest of her life.

Our family took a three day cruise to The Bahamas to celebrate my husband's 40th birthday the weekend after Thanksgiving.  On the second day, we stopped in Nassau, spending the day going on a shore excursion on a boat that allows you to see under the water, taking in the sights, shopping in the straw market, and dining on seafood and pina coladas.  It was a very fun, but completely exhausting day.

As we were in line on the gangway to board the ship, the line stopped to allow some disabled passengers skip to the front of the line so they did not have to wait.  One was in a wheelchair and the other had multiple sclerosis.  It was obvious, just by looking at them, that waiting in line for an extended period of time would have been difficult for them.

There was only one woman ahead of our group when the forward progress temporarily stopped.  JBird began asking my husband over and over why we had stopped and what was taking so long.  As time ticked by, he began asking faster and faster, "Daddy, what's taking so long?", all the while my husband attempting to keep him calm.

Suddenly, the woman standing in front of them whipped around and said exasperatedly, "You know, there are people who are disabled and aren't able to wait in line to get on the ship! You are just going to have to be patient!"  To which my husband replied, "Well he has Autism and (insert something probably far more diplomatic than I would have said)."  Her eyes grew wide and it was apparent that she had an 'insert foot into mouth moment'.

Let's just say, it is probably best that it was my husband standing there at the time and that I was toward the back of our group and did not hear her exact words during the exchange.  I am just not sure what would have come out of my mouth.

So, what do I hope she learned that day?  Never assume that a kid is just being bratty or that their parent isn't properly parenting their child.  Never assume that just because you cannot see someone's disability by the way they walk, talk, or look, that one does not exist.

This concludes the story of just another day in the life of spreading Autism Awareness.

And they lived happily ever after.

The End

Tides

"Everything in life is temporary.  So if things are going good, enjoy it because it won't last forever. And if things are going bad, don't worry. It can't last forever either."

This is, as such, the natural ebb and flow of life.  It is easy to settle in to the happy, calm moments like an over-sized warm fuzzy blanket, to fall into a comfortable routine and feel like everything, for the most part, is in order.  The steady rhythm hiccups and suddenly, you are thrown completely off balance and are desperately grasping for assurance.

True growth comes from these turbulent times and just when you think the darkness and despair will never end, suddenly the sun rises on a new day full of promise and possibilities.  The clouds pass and once again, you set eyes on the crystal blue sky and feel the gentle breeze on your face that carries away all your past troubles, if even just for a little while.

Mama, what's retarded mean?

"Mama, what's retarded mean?" my boy asks nonchalantly.  

He is continuously attempting to figure out his world by asking loads of questions.  What does a certain word mean?  Why can we hear a radio station clearly in one part of town but static-y in another part of town?  How many cities away are we from the town where "XYZ" radio station has their radio tower? Why is there natural electricity in the air?  The list goes on and on.  And on.

I feel like Mamapedia, although many times he completely stumps me and I have to say the words he hates to hear, "I don't know".  Sometimes my brain gets tired from the rapid fire questions and starts to shut down, but not this time.  Not this question.

My ears perk up instantly while simultaneously my stomach turns.  No, no, no.  I didn't see this one coming.  Buying myself some time, I respond, "What did you say, baby"?

"What's retarded mean" he repeated.  

As calmly as possible, I ask him where he heard that word.  Please God, don't let someone have called him that.  I have too much on my plate and too many responsibilities to land myself in jail. 

"I was playing a video game with a kid online* and they messed up and then they said, 'I'm not even retarded!', so what does it mean?".  Ever-so-slightly relieved, I explain that it is an offensive word that people who are either lazy or uneducated use to call someone or themselves stupid or slow.  

Okay, probably not the best or most concise definition, but it took all the will power I could muster to not embellish it with expletives or insults.  He countered, "Well, I'm not stupid or slow so I'm not that bad word either!".  "No, you most certainly are not", I acknowledged. 

This one hurts my heart, you guys.  Badly.  It took me days to find the courage to write about it. There are damaging, afflictive words that need to go away with a quickness and this one is tops on my list.  No, I'm not overly sensitive or overtly PC.  

However, I am someone who will contemplate your intellect and character if you use that word.  I hear there are great 'word-a-day' apps or websites that can be used to strengthen your vocabulary.  If you need help locating one, let me know and I'd be happy to help you out.

Isn't it time we teach our children (and I'm looking at you too, adults) respect for all?  Can't we do better?  Yes, yes we can.

*Before you get on my case: Yes, we closely monitor who he plays with online.  Yes, we are sure it was a kid.  No, I don't want your opinion about it. 

Horse Before The Cart

It's funny how you can be going about your day, any ordinary day, and get knocked up side the head with a life lesson completely out of nowhere.  It often comes from the unlikeliest of places and happened to me today at the dentist office.  I, someone who lives with autism in my life day in and day out, someone who has read and continues to read a bajillion autism related articles, blog posts, books, watches videos, advocates, who GETS autism....I got schooled by my dentist, whom I love, about autism. It was a lesson that took me by surprise, which was why it was so powerful and has had such a profound affect on me.

It started out as any other dental cleaning appointment.  At the end while talking to the doctor, I mentioned that I needed to schedule an appointment for my son, who is autistic, to have some teeth extracted.  I asked him some questions about the procedure and most of my questions were based on the fact that my son is autistic.  He was very polite, answered my questions, and walked me up to the front desk where patients check out.  While I'm going about my business scheduling future appointments, he steps away for a bit then walks back over.

The next few sentences that came out of his mouth have been playing on repeat in my head all day, and will likely in days and weeks to come.  He asked, "What is autism, exactly? It is a diagnostic code that doesn't really say a whole lot about a person".  Of course, I was caught off guard and started describing some of the classic commonalities that are associated with autism, like speech delay, levels of social ineptitude, etc.  As soon as I stopped talking, I knew that this very intelligent, kind, and successful man was not looking for me to rattle off the list of 'what autism is'.  I have a feeling that he knows exactly what it is.  Very well.  And perhaps, that is why we get along so well.

What did I learn today? Well, the old saying, 'don't put the cart before the horse' came to mind, but in an entirely different context.  The cart in this analogy is autism and the horse is, well, my son.  I do not need to preface every task, interaction, communication, procedure, relationship that my son is a part of or involved in with autism.  You see, while the cart can sometimes explain or shed light on a situation for the benefit of someone else's understanding, it most often does not benefit him.  The contents of the cart do not define him.  It is only a facet of the multitude of parts that make up this awesome dude.

I've got to learn to let the horse lead the way.  In other words, presume competence in all things.  Always.  If I don't, then who will?  His dentist, for starters.

Thirty Eight

Listen up.  I'm making a declaration here.  Starting today, I will live a healthy fitness focused lifestyle.  I will exercise, eat healthfully, and take time for me.  Yesterday was my 38th birthday and today is the first day of my new journey and attitude.  You can have everything one could ever hope for in life, but what is it worth if you don't have your health?  Optimal health.

It began today.

Jeep Hair Don't Care

Jeep.  It's a Jeep thing, you wouldn't understand.  Jeep wave.  Because Jeep.  Who knew there was such a vast culture and camaraderie among Jeep owners?  Not me.  There are endless accessories, a hierarchy based on what kind of Jeep one drives, clubs, and memes.

When my husband first started thinking of buying another Jeep (he had a Cherokee when we first met), he thought it would be fun to have for the summer.  We can access 4x4 only areas of the beach.  We could put the top down and enjoy even more of the Florida lifestyle that we love so much.  He finally pulled the trigger and bought one several months ago.  It is a Wrangler Unlimited Sahara and boy, is it fun!

We first took it to a 4x4 only area in Vilano Beach called Porpoise Point to break the ice.  It's beautiful.  I see lots of visits there in the future and are now there usually at least once a weekend.  The next day we drove it onto St. Augustine Beach, just to check it out as we had never been there before.  Little did we know, there are miles and miles of 4x4 only beach driving there.  We ended up south of Crescent Beach.  We had all three kids piled in the back and had to listen to a rousing rendition of the 'Are We There Yet' song, but it was so worth it.

What can I say?  I've been bitten by the Jeep bug.  My husband says that life is too short to drive a boring car.  Now, I totally get it.  Earlier this month, I traded in my minivan and got a Jeep of my very own.  A bright ORANGE Crush Jeep.  I had driven minivans for 10 years while my kids were little....huge change for me!! I'm loving it!

It's true, Jeep Hair Don't Care!

Chances are.

It’s that time of year again where everyone in the Autism community is called upon to ‘rah rah sis boom bah’ for Autism Awareness.  Unless you have been living in a cave for the past decade or more, you are likely aware.  I know I am completely, fully, utterly aware.  Autism awareness is every day for those of us who have children on the spectrum.   If you are not already aware, then chances are, it is by choice.  That is why April as Autism Awareness month is just plain exhausting for me.  

Yes, I said it.

I’m asking folks to take all of this wonderful awareness a step further.  

Acceptance.  

Isn’t that what everyone wants?  Just to be loved and accepted for who we are?  I often cringe when I read comments on Autism blogs that say, “We are fighting Autism!!”  I am all for research to understand and prevent possible causes.  I am all for the development of therapies to help children cope with and thrive despite their disability.  I am all for parents doing anything and everything they can to make their children’s life easier and to ensure that they can function to the best of their ability.  That is not fighting Autism.  That is being a loving parent.  That’s what any of us would do.  

I have been through that phase of desperation where you never feel like you are doing enough for your child, where you must DO ALL THE THINGS to make it better for them.  A part of that never goes away, but personally, when I accepted my son for exactly who he is, I found peace.

  

Being a parent is hard, but being a parent to a child with a disability can sometimes bring you to your knees.  Being a sibling to someone with Autism is hard, although my children are unequivocally better people because of it.  Most of all, having Autism is hard.  Sometimes even when you have the ability to speak, you cannot articulate exactly what you mean or need, which is incredibly frustrating for the child.  Throw in a cluster of sensory issues and you would not believe the strength it takes just to get through each day.  My boy is strong, sweet, hilarious, and so much more.  He inspires me.

I will always do what I feel is in his best interest, as I would for any of my children.  Now, this is where all of you come in.  Encourage your children to embrace differences among all people.  This includes skin color, body shape, interests, and abilities.  Encourage them to seek the ways that they are alike.  

Chances are, they will see there are more similarities than differences.   Chances are, they will gain a new friend.  Chances are, their life will be enriched by it.

Finally, befriend an ‘Autism family’.  I sort of hate that term because labels are just another way to divide and to make us an ‘other’.  But, be a friend.  Accept that family for who they are.  It may take a little more patience and understanding, but really get to know them.  They will be some of the strongest, most caring and loyal people you will know.   Be there, love and accept them without judgment.

 Chances are, you will have friends for life.