Angels on the Seas

On a chilly, blustery day somewhere in the Gulf of Mexico, I sat on the deck of a cruise ship watching two young women in orange T-shirts lift a wheelchair-bound teenager out of his seat, carry him up a flight of stairs, and slide down a water slide with him.  I watched as his face reflected pure glee at the bottom of the slide.  The ladies lifted him out of the water and carefully placed him back in his wheelchair.  Then they did the whole thing again.  All to give this boy a chance to enjoy an activity that most kids take for granted.

For five days I watched these orange-clad men and women place the needs of special children ahead of their own needs.  I watched them engage with the children, play with them, hug them, sing to them, swim with them, eat with them, calm and soothe them, and keep them safe from dangers.  I watched them do all of these things with unfailing enthusiasm, endless cheerful energy, and obvious love for children not their own.  One of whom was my own son.

Who ARE these people, these Angels in Orange?

They are volunteer members of an organization called Autism on the Seas (AotS).  Putting it simply, AotS gives families of special needs children a chance to enjoy a cruise with as little hassle and worry as possible.  In collaboration with Royal Caribbean International (and other cruise lines), AotS offers cruise vacation services to accommodate adults and families living with special needs children, including Autism, Asperger’s Syndrome, Down Syndrome, Cerebral Palsy, and all other cognitive, intellectual, or developmental disabilities.

How did I learn about this organization?

After going on a 3-night cruise in 2016, my husband and I concluded that we would never do it again with Peter unless we had help.  Navigating the ship, the lines, the elevators, and keeping him safe was stressful.  We had no free time to enjoy the ship’s activities because one of us would have to stay with Peter.  Meals were a disaster.  Upon our return, I did some research to see if there were any services available to help families in similar situations.  That’s when I stumbled across the Autism on the Seas website.  I read the testimonials and thought, “Hey, this might be a possibility if we ever do another cruise.”  I didn’t have long to wait!  In early 2017, my parents announced that they wanted to treat the extended family to another cruise during the holidays.  I explained AotS to them, and we booked our New Year’s Eve 5-night cruise through the AotS travel agency.  I crossed my fingers, hoping we had made the right decision.

What services do they offer?

Below is a summary of what AotS offers.  These services are available to ALL members of your party, whether or not they are special needs.  We were a party of 18 (extended family), and everyone could take advantage of AotS services if they chose to do so.

  • Priority boarding and disembarkation:  This is a HUGE deal.  There were 2000+ travelers on our ship.  Imagine the long lines to board (providing documentation, getting IDs made, securing payment information, etc.).  Peter would have had a meltdown for sure!  Instead, we found the orange shirts and balloons and were neatly escorted to the front of the line.  From the parking lot to the main deck of the ship took less than 30 minutes.  Amazing!  On the last day we were led directly off the ship to customs – again, no long lines.
  • Private Muster drill: If you have cruised before, you know what a headache this can be.  Multiply that stress by about 300 when you have a child with autism who is sensitive to noise and commotion.  AotS provided a PRIVATE muster drill for us, away from all the other passengers.
  • Qualified, experienced staff:  Our cruise had 2 Group Leaders and 6 Staff members. All AotS Staff are professional volunteers who have degrees relating to child development, behavior therapy, and/or special education.  Did you see that word: VOLUNTEERS??  These amazing people do NOT get paid for what they do!  Families pay a per-person service fee (only the families with the special needs children) to cover AotS services.  That’s it.  Families may tip the staff at the end of the cruise, and one would hope that everyone does that.  AotS staff deserve medals, not just tips!
  • One-on-one Services:  We opted to pay a little extra for a one-on-one therapist for Peter.  Our person, Nicole, was absolutely wonderful!  She spent nearly every moment with our family, helping at every meal and every event.  She stayed with Peter on the ship so the rest of us could enjoy a tour of Key West, FL.  She took care of him during respite sessions and accompanied us on excursions.  She got into the pool with him and kept him entertained.  Her help was invaluable!  Being able to leave the table at breakfast or lunch to go to the buffet might not sound like such a big deal, but it was to us!  Nicole would stay with Peter at the table while we got our food.  On the last morning, we arrived at the table to find that she had already gotten Peter’s breakfast all prepared for him, ready and waiting.  She had learned his likes and dislikes and that made all of us happy!
  • Daily respite sessions: Most mornings and afternoons, parents could take their children to the Respite Room and then have several hours of free time on their own!  We were secure in the knowledge that Peter was safe and happy – he had toys and games and super fun people to play with!
  • Private venue sessions: The AotS group reserved private sessions in the swimming pool, the rock climbing wall, and had reserved seating for all the shows. All of these included Staff assistance.  This allowed the families to participate without worrying about crowded areas or disturbing other passengers.  During the Rock Wall session, we left Peter in Respite while the teenagers and men in our family had a go on the wall!  We particularly loved the private family photo session with a ship photographer.  We were able to get some amazing photos of our extended family with minimal hassle!
  • Reserved seating at every meal and assistance at mealtime:  AotS had a reserved room in the Windjammer (buffet) and reserved tables at formal dinners.  Nicole sat by Peter even during formal dinners, taking care of his needs, so that we could enjoy adult conversation with our extended family.
  • Excursions: In Cozumel, the AotS group went to a private resort to enjoy the beautiful beach, swimming pool, and snorkeling.  Assistance at other excursions was available as well.

Hidden Services

While the above provides an official list of services (and you can see more on the website), it doesn’t include the most important services of all:

  • Peace of Mind: We had no qualms about leaving Peter in the care of the amazing AotS staff!  We were also secure in the knowledge that logistics for excursions and other events were handled with skill.
  • FreedomWe had many hours of “free time” during which we could enjoy the ship’s activities and the company of family without worrying about Peter.  We welcomed the New Year with cheers and a glass of champagne!
  • Amazing Memories: We will never forget Peter’s smile in the pool, or his joyous laughter on the water slide.  We will never forget the hugs and smiles he gave to Nicole and the other AotS staff members.  We will never forget Team Orange!

Thank You, Autism on the Seas!

This cruise was an amazing experience thanks to the Staff from Autism on the Seas!  Guys, we think you should change your name to Angels on the Seas, because that is the truth!  Where else would you find 9 people willing to spend their vacations taking care of special needs children on a volunteer basis?  The world needs more people like you guys.  Our family thanks all of you for the amazing work that you do to make the world a better place.

 

 

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Progress!

It doesn’t take much to make me happy.  A few minutes ago I received an email from Peter’s Coordinator at the Autism Academy of South Carolina.  The subject line was: Great News! 

Here is the message:

Potty

Though this may be TMI for you readers out there, it’s VG news for us!!

IMG_3490

Waking up to Chaos

Some days I wonder what it must be like to wake up slowly, to smell coffee brewing, to stretch my limbs and welcome the new day with open arms, to spend a peaceful morning nursing a cappuccino and reading a book.

Instead, I get this: SLAM!!!  BANG!!  I awaken with a jar, heart pounding, and sit upright.  Then I flop back down and peer with bleary eyes at the clock.  6 am.  Peter is awake. Time to hit the ground running!

Continue reading “Waking up to Chaos”

Top 10 Stress-Inducing Phrases You Hear in Our House

You will often hear some pretty crazy things in our household. We say things we never thought we would ever utter!  Some of the exclamations induce immediate stress. Here are the Top 10:

10.  “He’s naked again!”

Peter likes to take his clothes off when he is hot.  Who can blame him?  He does not have a care in the world if anyone sees him naked.  I envy such freedom!  (Not that I’d prance around the house naked, but… you know what I mean!)

Continue reading “Top 10 Stress-Inducing Phrases You Hear in Our House”

Words from Peter – Holidays PART 1: HALLOWEEN

NOTE: This is the first of a series of insights on the holidays from Peter’s point of view.  It’s what I imagine Peter may be thinking during the hustle and bustle of a season that normally brings peace and joy. I am hoping this helps people to understand the problems autism families face during family celebrations and community events.

Last week I had to wear a spider shirt to Academy.  Mommy tried to put a hat on me and a different shirt and pants but I didn’t like those.  Hats make my head feel funny and I do not want anything on my head.  She said, “This is a doctor costume, Peter, it’s fun! You should wear it!”  But I don’t know what is a Costume and it was no fun and I did not want it.  Also I do not like doctors.  They have scary silver things they stick in your ears and mouth.  I did not want to have on a doctor shirt.

Continue reading “Words from Peter – Holidays PART 1: HALLOWEEN”

Locked Out!

NOTE: Having just read Bridget Jones’s Diary, I shall write post in manner of Bridget Jones’s Diary.

October 26, 2017. 

Number of times have rung doorbell: 5,322 times. V. Bad

Number of rocks painted: Nil. 

3:15 pm:  Have just picked up Peter from Academy and shall head straight home as Thomas must stay after school for Student Council.  Husband will pick Thomas up later.  This is V.G.  Chance to have nice quiet afternoon painting rocks in manner of Buddhist Monk. 

3:17 pm: Realize “nice quiet afternoon” does not exist in household so must amend expectations. Will plan to give Peter bath and start dinner before painting rocks in manner of Buddhist Monk. 

3:45 pm:  Arrive home, get out of car, and hear dog whimpering inside.  Dog must need to go to potty.  As Peter also needs to go to potty, hurry to carry various items from car into house, get Peter out of car, hurry back inside, and let dog out back door.

3:47 pm: Standing on back deck watching dog, I hear SLAM! CLICK!  Pray I have mis-heard ominous sounds and turn slowly to look at back door.  Back door is closed.  Back door is locked.  AGH! V. Bad!

3:48 pm: Panic sets in as scenarios race through brain.  Peter needs to go potty.  Peter is alone in house.  Pantry is unlocked.  All room doors are unlocked!  MUST GET INSIDE NOW! Rattle door knob frantically and shout “Peter, open the door!” quite loudly, in manner of Drill Sergeant.

3:49 pm:  Dog has returned to deck with expectant look at door.  Peer in door window.  Can see Peter sitting on living room chair.  He looks at me.  He looks at dog.  He looks at iPad.  Ignores my shouts to unlock door.  I look down at dog.  She looks at door.  Peter looks at us both.  Ignores us.  GAAAAHHHH!

3:52 pm:  Okay, must stay calm.  Calm.  Deep breaths.  Am calm like zen Buddha.  Think of options.  Garage is closed.  No windows are open.  Do not have phone as phone is inside on kitchen counter.  Do not know if neighbors are home.  Even if neighbors are home, do not remember any important phone numbers as numbers are stored on phone.  Which do not have.

3:55 pm: Decide to try going to front door and ringing doorbell.  Peter does not like doorbell, so have hope he will want to stop annoying sound.  Make way to side gate to head to front of house and STOP.  Side gate is padlocked.  Padlocked?!  Why?  WHY?!  Why is back gate padlocked? GAAAHHH!!!  Does husband think padlock on 5-foot fence will stop burglars?  Does husband think padlock will keep greyhound from jumping 5-foot fence?  What is POINT of padlock?!

3:59 pm:  As do not know combination to padlock, have decided to leap over fence in single bound.  Or get chair from deck and climb over fence in manner of clumsy awkward clown.  Hope there are no neighbors watching antics.

4:01 pm: At front door.  No sight of boy.  Proceed to ring doorbell 5,322 times while yelling “Peter!  Open the door!  PETER!!!”  Might have mumbled curse word or two.  Or five.

4:06 pm: Am just about to head to neighbor’s house when see Peter coming down stairs.  He looks at me.  He looks at iPad.  He looks at me.

4:07 pm: Have inspiration.  “Peter, do you want a cookie?!” I yell.  EUREKA!  Peter comes to door and fiddles with lock.

4:10 pm:  Peter cannot turn lock.  Are you kidding me?  He is Houdini Boy.  He has unlocked all child-proof locks in existence.  Now cannot turn bolt lock?!!  GAAAHHH!!

4:12 pm:  “Turn the lock HARD, Peter! Turn it HARD!”  Am beyond caring if heard by neighbors.  Have turned into sweaty mess.

4:15 pm:  CLICK!  Hurrah!  Hurrah!  Peter has unlocked door!  Rush inside, hug him, and say, “You did it!  You unlocked the door!”  Then yell at him for locking door in first place.  Then hug him again.  Then yell again.  Now must…OOH! Telephone. 

4:30 pm: Was husband. Hung up phone after quite long rant beginning with “Do you know what YOUR SON did to me?!” Realized did not ask husband why he called. Also forgot to ask PURPOSE of PADLOCK. V. Bad. 

10:33 pm: Did not have quiet afternoon painting rocks in manner of Buddhist Monk. Never have quiet afternoon painting rocks in manner of Buddhist Monk. Am painting rocks, though, finally.  Is a start.  V.G.

 

The Autism Parent: An Untapped Resource for the F.B.I.

Considering the amount of time it took me to find the source of the fluff in Peter’s bedroom (2 weeks), we can safely conclude that I fail at the art of investigation.  However, it has recently occurred to me that there is a skill set, heretofore unpublicized and sorely underutilized, that falls within the repertoire of virtually every autism parent that I’ve ever met.

“Huh?” you ask, quite intelligently.  “What skill set?”

“STRATEGIC, OPERATIONAL, AND TACTICAL LOGISTICS,” I answer.

It’s true.  While every parent has some level of logistical skills, the autism parent learns (real fast!) to develop those skills to military level.

I shall describe what I mean below:

Continue reading “The Autism Parent: An Untapped Resource for the F.B.I.”

The Case of the Reappearing Fluffballs

Yesterday I spied on my son.  Turns out I’m no Nancy Drew, because I did NOT solve the mystery.  Back to Spy school I go!

Let me explain.  Peter’s room is basically the only “Peter safe” room in the house.  My dear Dad turned the bedroom door into a barn door, whereby we can lock the bottom half and leave the top half open.  In essence, we are able to lock Peter in his room for short periods of time (don’t judge) and still be able to hear what he is doing.  Mostly.

You may note that I put quotation marks around the words “Peter safe,” above.  This is because as soon as you think you have a room Peter-proofed, he immediately proves you wrong.  It’s his talent.  Case in point: Last week he discovered his window shades and proceeded to gnaw on the little wooden knobs attached to the ends of the cords.  So I cut them off.  This week he has discovered the joy in lifting and dropping the shades with the cords, over and over.  Slam!  Shades down.  Whoosh!  Shades up.  You get the picture.

Continue reading “The Case of the Reappearing Fluffballs”

That’s When it Hit Me

Scene Heading: The First Time I Realized My Son’s Disability Was Obvious to Others

The Setting:  A Christmas party at my sister’s house 4 years ago.  It is late in the evening.   The party is magical, as it always is whenever my sister is hosting.  The atmosphere is festive, jovial, full of the spirit of the holidays. 

Peter, at age 4, is scurrying about “doing his thing,” playing with his iPad, jumping up and down with excitement, making happy sounds, eating his favorite chips and pretzels.

I am standing in the kitchen, smiling at my son’s obvious happiness, when I notice a woman – a stranger – staring at Peter.

The Dialogue:

Me:  Hello.  I’m Laura, Maria’s sister.

Woman:  I figured that out.

(a beat)

Woman: What’s HIS problem? (nodding towards Peter).

Continue reading “That’s When it Hit Me”

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