The Funny Things You Hear in Our House-EPISODE 3: We Need More Duct Tape!

Probably our family should invest in the Duct Tape stock market, or however that works.  Also packing tape, superglue, and batteries.  When we say that Peter wears out his toys, we really mean it!  At our house, you’ll see toys all over the place in various states of destruction – wheels missing from trucks, gouges and scratches on plastic toys, and pages torn or missing from books.  Peter is destructive.  He doesn’t do it on purpose, that’s just the way he is.  He likes to pull things and smash things and rip things.  He also likes to chew on books.  He’d rather chew on a book than on real food, like an apple or a carrot.  This is another example of him being unaware of what is socially unacceptable.  Do I rip my textbooks up at school and pull apart my classmates’ backpacks?  Do I chew on the corners of my Algebra book? No way, because I know that’s not the way to act at school. Peter doesn’t have that awareness, so he does whatever he feels compelled to do.

Due to this state of destruction, we have huge supplies of repair materials around the house.  Lots of duct tape.  And I feel really bad for my mom.  Why?  Because she’s a librarian, yet all of Peter’s books are held together by clear packing tape.  You can see her cringe when another page rips and she has to stick it back in a book with tape.  It’s against her nature.  But she does it anyway.

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The Funny Things You Hear in Our House-EPISODE 2: Tell Me What You Want on Your Talker!

NOTE: See the Introduction for an overview of this “manuscript” told from a sibling’s viewpoint.

Though Peter is 9 years old, he has never said one word.  Like, ever.  He can’t talk.  Nobody knows why.  Doctors have done all kinds of tests on him, and we know that he can hear and see just fine.  He makes sounds so he’s not mute.  He just can’t seem to speak. Continue reading “The Funny Things You Hear in Our House-EPISODE 2: Tell Me What You Want on Your Talker!”

The Funny Things You Hear in Our House-EPISODE 1: Hurricane Peter Has Struck Again!

“Why do you even bother making Peter’s bed?” I asked my Mom the other day.  She was in Peter’s room, putting things in order for about the seventh time that day.  When I say things like this, just assume I am NOT exaggerating.  This is what happens day in and day out: Continue reading “The Funny Things You Hear in Our House-EPISODE 1: Hurricane Peter Has Struck Again!”

The Funny Things You Hear in Our House: Introduction (sibling viewpoint)

BY WAY OF EXPLANATION:  Having spent the better part of two years trying to find a publisher for this manuscript, I decided to give up and instead post this work, one section at a time, on this blog.  One chapter a week. What better platform that one that is already devoted to revealing what it’s like to be US?

This book is told from the sibling’s point of view (think of Thomas, our middle child, when you are reading).  It’s meant to be a lighthearted work for siblings and their peers that promotes an understanding of autism through anecdotes.  It’s intended to teach teens or ‘tweens about autism through the eyes of a brother.  Please share with any teens or ‘tweens you know!

I KNOW there is an audience out there for this work.  If any of you has a connection to the publishing world, by all means feel free to share these “chapters”!  The more people that read about Life with Autism, the better to promote awareness and acceptance.  Continue reading “The Funny Things You Hear in Our House: Introduction (sibling viewpoint)”

When Our Son is Sick – Part 2

Last year, I wrote this post when Peter had fever and some kind of stomach bug.  I talked about how incredibly difficult it is when a nonverbal child is sick, and how helpless we, as parents, can feel.  Once again we’re dealing with another illness that has been making its way from person to person within our family.  Fever, congestion, fatigue.  Maybe the flu.  Maybe not.

Peter has had fever since Friday.  He woke up flushed and lethargic.  I checked his temperature, and – sure enough! – a fever.  My anxiety spiked immediately.  I knew that I needed to get medicine in him ASAP to bring the fever down.

Continue reading “When Our Son is Sick – Part 2”

The Cereal Box

Peter tends to fixate on random things for reasons that are unknown to us lowly “neuro-typical” folks.  By “random things” I don’t mean stuffed animals or toys, which you would expect from a kid his age.  I really mean random things.

Last week it was this set of plastic plates:cereal4

First thing each morning, he would make a beeline to the kitchen drawer where they are kept, retrieve them, and proceed to tote them around all day long.  We had no clue why.  Was it the cute dalmatian images?  The sound the plates make clinking against each other?  No clue.  But he had to have them near.

Yesterday the “random item” changed.  To a cereal box.  Not the cereal.  The box.  THIS box:

cereal3

Let me immediately state that I am in no way compensated by Kellogg’s company to advertise their product.  In fact, we have never bought this particular product.  Yet we were compelled to do so yesterday by none other than – you guessed it! – our nonverbal son!

Here is the story:  Peter and his dad (Patrick) went on their Saturday Outing to Publix. (Again, no compensation for the mention of this particular grocery store, which happens to be Peter’s favorite.)  Normally Peter likes to first play with the carts (that’s another story) and then go along with his Dad to various favorite spots within the store.  Yesterday, however, the routine changed.  Upon entering, Peter bypassed the carts (!!!!!) and ran through the store, followed frantically by his Dad.  He would not stop.  He had a purpose.  He went straight for the cereal aisle where he made his way directly to this box of cereal, grabbed it from the shelf, and did a Happy Dance.

To put it mildly, Patrick was a bit perplexed.  This was not Peter’s normal favorite cereal.  This was Raisin Bran.  Peter does not like raisins and will not put one in the vicinity of his mouth.  Patrick tried to put the box back, but Peter would not hear of it.  Patrick tried to substitute the box for the store brand with the intention of saving a few dollars.  No go.  Peter was not going to part with that box of cereal.

So the box was bought.  It came home.  And it stayed in Peter’s hand or very nearby for the rest of the day.  After dinner, our brilliant high-schooler (who LOVES raisin bran, by the way, and wanted to save it from contamination), suggested that we take out the bag of cereal and let Peter tote around just the box.  We did so, and Peter did not object.  That box was the first thing Peter looked for when he awoke this morning, and it has not left his side.  Even in the bathroom.

What is it about this box that fascinates him?  We don’t know.  He stares at the front.  He stares at the back.  There is a cute yellow sun on the front, but we’re not sure if that’s it.  There’s the same sun on the back, too, but he doesn’t seem to be staring at that.  It’s bizarre.  Enough to make us wonder… is there something that only he can see that the rest of us can’t?  A secret code?  The solution to the universe’s mysteries?!  Hey, Kellogg’s  Company – can you explain?!

This box will probably be around for about a week until the next random object of fixation appears.  Until then, well … we have some raisins to eat!

 

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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