My Top Tips for a Successful Disney Cruise (…especially for Children with Disabilities and Sensory Needs)

Our ship, the Disney Dream, docked at Castway Cay.

My son Ben just turned six years old, and this year his grandparents gave him the best birthday gift ever.  My family (which included me, my husband, our son Ben, my brother and sister-in law, and my mom and dad) all took a cruise on the Disney Dream.  Since this was Ben’s first cruising experience, we decided to start small with a 3 day cruise.  The cruise left the port on Friday and arrived back at Port Canaveral, Florida on Monday morning.  Ben LOVED cruising and cried huge crocodile tears as we drove away from his beloved ship.  He announced after that he wanted to live on the boat forever. 

My husband and I are no strangers to cruising, though we had never cruised on a Disney ship before.  Disney has top-notch customer service (as you would expect), and the staff went out of their way to accommodate us in any way that they could.  We had heard that Disney is the best cruise line for kids, and it certainly did not disappoint.  However, because Ben is autistic, we knew that thoughtful and careful planning would help make the experience more enjoyable for everyone. 

What follows are my tips to help make the cruise a more comfortable, enjoyable, and memorable one for your child and family, but the moral of the story is…if you need something, just ask!  You may not get everything that your heart desires, but you won’t know unless you ask.

So, without further adieu…here are my tips for cruising successfully with children (especially those with special needs)….

Dining

The Animator's Palate, Ben's favorite restaurant, early in the evening.

Let’s face it- one of the most enjoyable parts of cruising is the food.  However, eating can be a nightmare if you have a picky eater, as I do.  Luckily, Disney is in the business of pleasing kids, so you’ll find a wide variety of options to tempt even the most picky palate.  Still, it does not hurt to be prepared…

1)   Eat in the sit down restaurant for your first lunch on board.

On the first day of the cruise, you are assigned a time to go through customs and board the ship.  Lunch is served soon after.  We quickly discovered that everyone and their brother flocked to the top deck to eat at buffet dining. We spent several minutes hunting for a table in an area tightly packed with people before talking to the staff members to see if there were other dining options.  We soon learned that the restaurant downstairs was open as well.

So, my advice is, for the first lunch, eat downstairs in the restaurant.  Our open restaurant on the Disney Dream was the Enchanted Gardens, but if you ask any crew member, they should be able to tell you which restaurant has open seating that first day.  We were seated right away and there were plenty of food options on the buffet line.  The atmosphere was much more relaxed, less pressured, and comfortable.  There were even ice cream options at the end of the meal, so Ben was extremely happy.  I believe that this relaxed meal set the tone for Ben’s love of the restaurants in the days to come.

2)   Don’t be afraid to order “off menu”.

One of the great things about cruising is the dizzying array of food options.   Still, I would find myself dismayed time and again as I walked Ben up and down the buffet lines, trying to find him something that he would want to eat.  Cruise food is often “fancy” and looks different, which for a kid like Ben means that it’s too scary to try.  So, be prepared to ask the staff questions in order to get the food that you need for your child.  They will do their best to help.

If you choose to eat your dinners in the restaurants (which I highly recommend!), keep in mind that you do not have to order for your child from the child’s menu.  The kid’s menu consists mainly of pizza, macaroni and cheese, hamburger or hotdog, a pasta dish, and other kid fare.  Unfortunately, none of these appeal to my son, so most nights I would order for him off the adult’s menu.  The first night I ordered him chicken and salad (yes, salad!) and he ate them both happily.  They also have the famous Mickey ice cream bars for dessert, which he, of course, inhaled.  I was also told that if you or your child loved a meal from the night before, you could request it the next night, and often they would be able to honor your request.  We never had to try this but it was good to know that it was an option.

3)   Eating in the Restaurants

Ben coloring while waiting for his food at the Animator's Palate, which happened to be on Pirate Night.

There are three main restaurants on the Disney Dream, and you will rotate to a different one each night.  Each restaurant has its own appeal and charm, but you won’t want to miss the Animator’s Palate.  The walls are computerized and interactive.  The room changes color as the evening progresses, which is mesmerizing to watch.  The Finding Nemo characters even make special appearances.  Crush the turtle popped up on the screen by our table during the meal and had a conversation with us (much like he does at Epcot). 

The meals are long but there’s always plenty to see and do.  Your wait staff will follow you to each restaurant, which is great because they get to know you well.   Our server Yetka went out of his way to charm Ben from Day 1.  He would sprinkle Disney Magic throughout the evening. While we waited for our meal, he would stop by and perform a magic trick for Ben or take his dinner menu and fold it into an origami crane.  Yetka tried very hard to get a reaction out of Ben with his different tricks and stunts, and when Ben wouldn’t react, he kept trying harder and harder to impress him.  Because Ben is autistic, he doesn’t always react with a smile or in typical ways that people would expect.  As we were leaving the dining room the second night I took Yetka aside and explained to him about Ben’s autism.  He was so understanding and compassionate and continued to go out of his way to please him throughout the cruise.  It warmed my heart to see that he genuinely cared for my little guy. 

At breakfast and lunch you will have the option between eating in the dining halls and upstairs on Deck 11, which is a self-serve buffet.  We ate in the sit down restaurant the first morning for breakfast, and while it was a beautiful atmosphere, it took a very long time for the food to arrive, and the food was good but not amazing.  We decided to eat in the buffet after that for breakfasts and lunches.  Ben definitely preferred the upstairs buffet for breakfast and lunch (and so did we).  On the final Monday, everyone had to be off the ship by 9 am, so we did eat in the restaurant, and they were much quicker and more efficient.  You also get your own wait staff on that last morning on the ship in the restaurant, so it’s a nice way to get pictures and say goodbye.

There are two other restaurants on the ship that do cost extra, but the food is supposed to be amazing.  We did not try these but I would definitely consider doing them in the future.  They are adults-only and do require semi-formal or formal attire.

4)   Other Dining Choices

Deck 11 has several different food options, including the buffet restaurant I’ve mentioned.  While I recommend avoiding it for lunch on the first day and on the last day at breakfast (when it’s super crowded), it was a great option for meals throughout the rest of our cruise.  It was Ben’s favorite restaurant on the ship (aside from the Animator’s Palate) because it had lots of options, it was self-serve (aka fast), and it had a more relaxed atmosphere (except at peak times).  We would usually eat there for breakfasts and lunches.  On the days when the ship docked at the Bahamas or Castaway Cay, we would eat upstairs for lunch and practically have the place to ourselves.  Keep in mind that room service is also free (minus tips) and there is also the pizza and sandwich restaurant upstairs that’s open practically all the time.  Unfortunately, they did not serve alfredo pizza, the only kind Ben will eat, but it would be a hit for other kids, I am sure.

5)   Bring you child’s favorite snacks…just in case (and bottled water).

I know it seems kind of crazy to bring snacks on a cruise ship full of food, but if your child is an extremely picky eater like mine, it makes sense to have extra snacks on hand.  The snacks really came in handy in the stateroom in the afternoon hours between lunch and dinner, when Ben wanted to watch Disney cartoons in the stateroom and take a break. 

Also, Disney gave us two luggage tags per person, which was much more than we needed.  So, we designated one small suitcase for bottled water and snacks.  At the end the cruise, we used the now-empty suitcase for souveniers, and it worked great.  Bottled waters will cost on the ship, though you can fill your bottles in the drink stations upstairs.   Sodas and juices are free on Deck 11.  Also, keep in mind that there is a concession stand next to the movie theater that has snacks, though they will charge you for the concession items.  We bought Ben the refillable bucket of popcorn, since he’s a huge popcorn fan.  I wish we would have bought it sooner on the cruise to really get our money’s worth, but he enjoyed it the last couple of nights during the shows and in the movie theater.

Entertainment

Ben swimming in the Mickey pool on a busier afternoon.

1)   Skip the sail away party if your child hates loud noises....

Disney has many great entertainment options that kids will love.  However, for a child with sensory needs, this can quickly become overwhelming if you are not prepared.  For example, the Sail Away party on Deck 11 was so packed with people and loud that we only stayed a few short minutes before retreating to the buffet restaurant upstairs (which was empty) and watched the boat sail away in calm and quiet.  You know your child best, but we decided for Ben, the open air parties on Deck 11 in the evenings were just too loud and too much for him.  There were fireworks on Pirate Night, but they weren’t until 10 pm, so we decided to pass on them too.  We could hear the music pulsing from our stateroom, so I think passing on the firework show was the right choice for us.  This was the only night we heard loud music in the evening, by the way, and Ben slept through it all soundly.

2)  ...but don't skip the shows in the theater!

However, Ben LOVED the evening theater shows.  We had the early dining time, so we were able to eat, watch the show, and get him to bed by 9 or 9:30 on most evenings.   Ben was tired the first night that we decided to let him sleep instead of watching the first show (The Golden Mickeys) which was a shame, because he LOVED collecting the “Golden Mickeys”, these jumbo sized golden Mickey Mouse confetti that were sprinkled throughout the ship for the rest of the cruise.  The second night was Villains, which was a comedy and not scary to him at all.  The third night’s show I think was called Believe and featured characters and scenes he recognized, and he enjoyed singing along to his favorite tunes.  If your child has never been to a live theater show before, I would suggest sitting towards the back in case you need to make a quick getaway.  The shows were less than an hour long, fast-paced, and entertaining for all ages. 

There are also plenty of movie options on the ship.  Ben also enjoyed watching Big Hero 6 in the movie theater one afternoon.  There are Disney movies, both classic and new, playing in the theater and in the stateroom at different times throughout the cruise.  There are even movies playing on Deck 11 that you can watch from the pool.

3)   Speaking of the pool area…

Ben and his papa zooming by on the Aqua Duck.

Deck 11 is every child’s fantasy come true.  There are two large kiddie pools (one shaped like Mickey) and a hot tob (and adult-only pools and hot tub in a separate area!) along with a Finding Nemo splash pad, a water slide, and then this giant water tube that snakes around the entire top of Deck 11 (and out over the water away from the ship) called the Aqua Duck.  One afternoon while we were at port in the Bahamas, Ben braved the Aqua Duck with his Papa.  They had to wait about 20 minutes to get on the ride, and my Dad said that initially Ben was squirming to get off, but by the end he was super psyched about the ride!  When he got off he yelled, “That was awesome!!!”  The swimming pools are often very crowded, so seek them out at times when the crowds will be elsewhere.  For example, the pool was pretty much deserted in the afternoon on the day that everyone was on the island, so that was the perfect time for Ben to take a dip with the grandparents. 

4)   Castaway Cay is the place to be!

Ben had lots of fun in the sun on Castaway Cay.

Disney has their own private island called Castway Cay (pronounced Castaway Key) and it is truly lovely.  It is a small, relatively undeveloped island in the Carabbean with beautiful sandy beaches.  The island has both a family beach and an adults-only beach.  There are even restaurants to eat at for free while on the island.  We didn’t eat on the island, but my parents did and said it was very good.  You can snorkel on the island, bike ride, and do a variety of other activities.  There’s even a 5K run.  My advice is to get to the island early and stake claim to the free beach chairs and enjoy the beach while it is quiet.  There were very few people on the beach in the morning so we enjoyed the calm and quiet while Ben dug in the sand and splashed in the water.  We brought our own beach toys, but they had a store with beach supplies that were pretty reasonably priced.  I would recommend bringing plenty of sunscreen, from home as this can be costly to buy on the ship.

We headed back to the boat for lunch (it parks right at the dock so it’s not far if you want to come and go from ship to island), and then Ben went swimming in a nearly empty pool on Deck 11 and watched a movie later in the afternoon.  It was a great day!  We saw the crowds heading to the island as we were leaving around noon, so we once again avoided too many people and enjoyed the quiet and calm (which Ben both needs and craves). 

5)   Check out the kid zones.

The kid’s club on the ship for Ben’s age group is called the Oceaneer’s Club.  They also have a babysitting room for babies (for a cost) along with a room for preteens and another for teens.  The Oceaneer’s Club was a great setup.  It had a dance floor that lit up, a room with oversized Toy Story characters, a Monster’s Inc room, and a room full of computers, among other things.  The kid’s club has Open House times when the whole family can explore the area with the child and then they have times when the child must stay with the Disney staff and can different projects and fun events. 

Ben stayed one time by himself and got to design his own racecar and then race it in a competition.  He had a blast but he usually wanted to be with us and didn’t want to stay in the kid’s club by himself after that.  However, I found the kid staff to be high energy and excellent with the kids.  Each child in the Oceaneer’s club had an arm band that served as a sort of GPS device.  They scanned it upon entry to the room, and each adult picking up the child had to know the family code word (designed by the family) for the child to be released to them.  The technology in the room was amazing.  For example, the day I went to get Ben, the lady looked on the computer and could tell that Ben was in the rec room playing video games (I guess from the tracking device). 

We didn’t take advantage of the Oceaneer’s Club as much as we could have, but they had great events the entire time.  Characters would stop by at certain times during the cruise, the kids would have fun projects to do, and dance parties.  On the day that the ship is at Castaway Cay, the kid’s club takes place on the island and the kids do things like treasure hunts in their little part of the island.  However, the children have to be dropped off.  Adults can’t stay with them except during Open House time.  Ben was having none of that, so just be forewarned.  The kid’s club staff can call you using the ship cell phones (see below) if an issue does arise.

Character Meet and Greets

We missed out on seeing Captain Hook.  Here he is with two random children.

1) Meeting the Characters

What would a Disney cruise be without the Disney characters?  From the moment we arrived at Port Canavaral and went through customs to the time we exited the ship, the Disney characters were out and about.  There are no shortage of opportunities to see them, but be warned that, just like at the parks, the lines can be long, especially at peak times such as Pirate night when certain characters (like Captain Hook or Pirate Mickey) make one-time appearances.  My best advice is to get in line for the characters your child loves about ten minutes early, because they do not stay once their time window closes. 

Ben is not a big fan of costumed characters as a general rule, but he did pose for a couple of Mickey Mouse shots, along with his pal Stitch, who we saw right away when we got on the ship.  We got a great shot with the whole family and Mickey once we got off the ship at Castaway Cay. 

2)  Character Autographs

Don’t worry about getting the characters to sign the autograph book while on the cruise.  Instead, bring the matte square from inside a picture frame and put it inside a Ziploc bag with markers.  Then, bring the bag to Guest Services within the first day or two, and on the last night of the cruise, the bag will be returned to your stateroom with autographs from all of the Disney characters!  You can choose to do Mickey and Friends or the Disney Princesses.  There is a limit on two per stateroom.  It’s a great (free) trip memento!

3)  Pirate Night

Ben checking out the hanging monkey on Pirate Night.

Disney cruises have a pirate night, when everyone dresses up like pirates.  Disney will provide you with a bandana in your stateroom, but many people really get decked out for the night, and you don’t want to be the only one not dressed in proper pirate attire.  Also, it’s a great opportunity to get your picture taken with Pirate Mickey, Captain Hook, and other characters.  We bought a pirate outfit for Ben on Amazon and packed it in the luggage, and he absolutely loved transforming into a pirate for the evening.  There are pirate costumes and props for sale in the gift shops (we bought Ben a plastic hook), but everything is obviously more expensive on the ship, so come prepared.  This is also the night that the show Villains played in the theater.  As I mentioned earlier, make sure to stake your spot in line early to see the characters that appear that night.

4)  Pin Trading

Ben is carefully making his selection for the trade.

Ben is a huge fan of collecting things, and so we thought he might have fun pin trading.  My family bought him special pins to wear during the cruise, along with a lanyard.  There is one special time on the last evening when you can trade pins with the ship's officers.  Ben loved doing this, so if your child is a fan of pin trading (or just likes to collect things), it is worth doing!

The Cabin

Aaah!  Nothing like a freshly made bed, a towel seal, and chocolate mints! 

Disney cabins are, in my opinion, the best in the cruise industry based on the cruise lines I have sailed on in the past.  They have lots of storage nooks and crannies and have more bathroom (aka shower) space then most.  We did have a cabin with a balcony view, which I highly recommend if it’s in your price range.  Here are some things to bring and do to make your cabin even more enjoyable.

1)   Decorations

There was so much cabin storage that I was able to use some space for displaying cruise mementos!

The cabin doors are magnetic, so bring magnets to decorate the door for extra fun.  This will also allow child to quickly recognize your door.  My parents paid a bit extra to have the Disney crew decorate the cabin for Ben’s birthday.  This included a large birthday magnet for the door, an oversized birthday card, a huge banner (which they draped over the bed), and a hanging birthday sign.  For a price, Disney will add extra touches to any special event.  

2)   Lighting

The cabins are VERY dark once all the lights are turned off, so we brought touch lights for our cabin.  They came in handy in the closets and by the bedside at night.  There were nightlights that we kept on for Ben.

3)   Beds

Ben's special loft bed.  If you look, you can see the "night and stars" on the ceiling. 

Our cabin had a bed for my husband and me, and then Ben had a choice between a pullout couch and a loft bed.  Our cabin attendant asked us on the first night which we would prefer, and I hesitated on the loft, fearing he may fall out, but she encouraged me to try it and reassured me that he would have rails on all sides.  I’m so glad we tried the loft because he absolutely LOVED it.  It was one of the highlights of the cruise for him.  There were even little stars on the ceiling above his bed in the loft, and every night she would do special things with his stuffed animals in his bed.  The loft bed folds into the ceiling during the day for extra room space.  Of course, they do the towel animals and special chocolates as any cruise line will do. 

                   Communication

1)   Get the special cruise app

This was one of the first pictures I took on the Disney Dream.  Ben was in awe of the ship.

Disney has created a special app called Disney Navigator that is just for its guests on the ship.  If you have a smart phone, I highly recommend this app.  It has information on all of the special events on the ship, including character greets, meal menus, and show times.  You can add events to your favorites so that your phone will alert you just prior to the time of the event.  By far the best feature is the ability to text using the app.  Obviously, you cannot access wifi at sea, but the Disney Dream has it’s own way of communicating wirelessly, but you have to be connected to their wifi system.  The only downside is that for some of our family, you had to actually be in the app to see the alerts.  My phone would buzz when I got texts from my family, but my husband’s didn’t, so there were times when I was trying to text him but he wouldn’t see it until a half an hour later.  They are working on this glitch, but the other features alone made this app worthwhile.  If you don’t want to use the app, each stateroom has two cell phones for communication.  Or, you could always put a magnetic dry erase board on your stateroom door to leave messages for family and friends.

 

Yetka is quickly and efficiently cutting Ben's chicken while Ben plays shy.

Overall, we had an excellent time on the Disney Dream, and I would highly recommend it as the best cruise line for families.  Every staff member on board went out of their way to make the cruise experience a memorable one for our family.  Thanks so much, Mom and Dad, for making this special dream a reality for our family!

Why I Will Not Speak for #Autism Speaks

           

Ben is gently brushing his new bunny that he made at a recent trip to Build a Bear.  Build a Bear is one of the companies who have withdrawn their support of Autism Speaks.

             Recently a colleague of mine approached me about an opportunity that she had heard about.  She explained that there was an autism group getting ready to do an awareness walk, and they were looking for input from educators who were also parents with children on the spectrum.  My initial reaction was excitement, but then I paused and added, “I’d love to participate in this, but if the organization is Autism Speaks, I’m going to have to pass.”  She wasn’t sure of the name of the organization, so she said she’d find out more and get back to me.
             I know it must seem strange to those who are new to our autism community to think that I would dismiss a charitable organization devoted to the field of autism, so I thought it’s probably time that I post here about why I cannot support Autism Speaks.

            If you know me in the real world, you know that I’m a pretty even-keel person.  I am a moderator, a person who seeks multiple perspectives before making a decision, and I rarely dismiss any point of view.  I try to be thoughtful and reflective.  As my mother would say, “I seek the balance in life.”  But, on this matter, I feel I have to take a stand, and I’ll explain why.

            Autism Speaks is by far the largest charitable organization out there right now in the autism community.  Celebrities endorse it.  Companies sponsor it.  (Luckily Build a Bear recently withdrew their support!) Their annual walks attract millions of participants, many marching with T shirts that have puzzle piece signs (their signature logo). Places all over the world such as the White House and the Empire State Building turned on blue lights in April as part of their “light it up blue” campaign that sought to raise autism awareness. 

            Autism Speaks is so mainstream that their ideas are often the first ones that families who are new to the world of autism read about.  A quick Google search about autism will lead you directly to their site. 

            Please understand- I fully support autism acceptance.  Autism Speaks supports raising autism awareness.  This may seem like a small difference in terms, but, trust me, it is not.  Sadly, the approach that Autism Speaks uses to raise awareness has caused the autism community to become more polarized rather than bringing us together and valuing differences.

            On the website for Autism Speaks, you’ll find this description of the organization.  “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we've been able to accomplish and look forward to continued successes in the years ahead.”

            So why am I against this organization that has such strong support across the country?  Others have written on this topic before, much more eloquently than me.  You can read some of these posts here and here.  

            When I first started learning about autism after my son’s diagnosis, I read many books and watched countless videos on the subject.  It quickly became clear that our community is a community divided.  Autism is a spectrum and autistic individuals have characteristics that range from completely nonverbal and requiring extensive support to meet their basic needs all that way to completely verbal and fully capable of independent functioning, but requiring extra support in the areas of communication, sensory processing, and/or emotional regulation.  Each individual is unique, much like a snowflake.  No other exceptionality has so much variance within it.  My son falls on the more verbal, independently functioning side of the spectrum.  I cannot speak for the experiences of others whose needs differ from those of my son’s. I certainly do not seek to minimize the challenges that come with meeting the daily demands of caring for a child who needs this round the clock support.  These children grow up to become adults who may continue to require this same level of care, and certainly services need to be in place to support these individuals.   

            But (and this is a very big BUT), even those individuals on the most, for lack of the better word, severe end of the spectrum require the same level of dignity and support as does my son.  Just because a person cannot talk does not mean that he has nothing to say.

            And while I cannot speak for the experiences of others, I also cannot speak to my son’s experiences.  Only he can truly explain what it is like to be Ben.  I am not autistic.  I simply live with a person who is.  Autism Speaks, as it says in their name, speaks with a great deal of authority for those on the autism spectrum every single day.  However, Autism Speaks is speaking on the behalf of autistic individuals without ever consulting them first.  I’m going to make a broad comparison here. This would be a little like me speaking for a men’s group (Let’s call the group Men Speak) because I live with my husband and therefore know all there is to know about men.  You can see the absurdity in that.  I’m a parent of an autistic child.  I care for Ben every day and I know him very, very well, but I’ll never truly know what it feels like to be Ben.  This is why Autism Speaks absolutely should have autistic adults as part of their counsel.  They did have one person, John Elder Robison (author of the book "Look Me in the Eye"), but he resigned for reasons that you can read about here.

            If Autism Speaks did bother to ask autistic adults how they feel about the organization’s message, I don’t think they would like what they have to say.  If you were to ask an autistic adult how Autism Speaks makes them feel, they would most likely tell you that hearing things like autism is a tragedy and they are a burden to society makes them feel like they are worthless too.  Words can be very, very damaging, and for those who often think on a very literal level, this has the power to be absolutely devastating. 

             Autism Speaks views autism as a tragedy.  They have said so in their marketing campaigns.  One very famous commercial published by Autism Speaks called “I am Autism” makes autism out to be the bad guy stealing away our children from us.  It was actually produced by the same person who directed third Harry Potter Movie.  In the film you hear a deep, ominous voice narrating, saying things like  “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”  Autism Speaks uses fear tactics and inflammatory words because they believe that they need to scare the community at large into supporting the cause.  They use terms such as “autism epidemic” and “devastating” to garner support.

            Autism Speaks believes that autism is a disease that needs a cure.  They spend the overwhelming majority of the millions of dollars that they receive on researching to find a cure for autism.  Only 4% of their budget goes to “family services” to support the autistic children, and especially adults, already in the community.  And this is a huge problem because, as I mentioned before, a growing number of children are becoming adults who will require community supports such as housing, care, and job-related training and skills as needed. 

             We have to watch what we say around our children.  The former vice-president of Autism Speaks said on a PR video “Autism Every Day” that she has contemplated driving her car off the bridge with her daughter in it because of the challenges that her daughter brings.  She said this with her daughter in the room.

            Suzanne Wright, on of the founders of Autism Speaks, recently spoke at the Vatican and, in her speech, compared autistic individuals to lepers and “the least of us”.  Jess from “A Diary of a Mom” writes about this particular speech here.

            Can you see how I would not want my son hearing any of this?  My handsome, amazing little guy is not a burden, nor a leper, nor a tragedy.  He does not need to be cured as he is not sick.  If he had cancer, I’d be looking for a cure, but his brain is simply wired differently than mine, which causes his approach to the world to be different than many are accustomed.  This does not make him “the least of us.”  If anything, I’d argue that he is “the best of us.”

            Suzanne Wright would tell me that her organization is not talking about my son when they speak of the tragic epidemic (though she would conveniently use his diagnosis in her calculations of the numbers of those on the spectrum).  She would tell me that the tragedy and the devastation are referring to those on the more severe end of the spectrum, those who require constant care, those who are nonverbal or extremely aggressive or completely unresponsive to others and lost in their own world.  To which I would say this- don’t those children deserve the same level of respect as my son does?  Those children are also not a tragedy.  They are precious children.  And, whether they show it or not, they are also listening to what we are saying about them.  As they are becoming adults, they are speaking up and we are realizing that they heard and internalized so much more than we ever could have imagined when they were children.  They don’t deserved to be driven (or thrown) off a bridge.  They need support.  Their parents need support.  When they become adults they may continue to need supports.  But, sadly, most of the conversation (and finances) are not centered around creating opportunities and services for those on the spectrum.  This is what scares me most.  We’re so busy trying to find a cure and scaring everyone that we’re not spending time nor nearly enough funds towards finding solutions to the very real needs that are here now.

            So that, my friends, is why I cannot and do not support Autism Speaks.  There are many, many more examples, sadly, of the damage that this organization has done and continues to do.  I know that they do good as well.  They do offer scholarships in communities and job opportunities.  But I cannot associate with an organization that looks at my son, and those like him, as lepers and tragedies.  If you choose to support Autism Speaks, I respect your decision, but I wanted you to be informed as to why I cannot support them.   
            
             If you are looking for an organization to support, I would recommend  The Autistic Self Advocacy Network.  They are run by autistic people, for autistic people and their families.

Ten Reasons Why I love family game night

Ben is looking awesome in his shades during Family Game Night.

This past month has been a busy one for me.  I started teaching night classes at the local college, and this is in addition to my regular day job at the elementary school.  This means that for three nights a week, I drop Ben off at school in the morning and don’t see him again until he wakes up the next day. 

While teaching at the college level has been a dream come true for me, it means that family time has been severely compromised.  I’m glad that Ben and his dad are having special bonding time, but I miss our evenings together.

And so we decided to start a tradition in our home that so many families enjoy.

We instituted family game night.

Ben loves his games so much that now, every night is family game night.

His current favorite games are Trouble, Hungry, Hungry Hippos, and Monopoly Junior.  Ben has always been a number nut and he has a special love for money, so he connected to Monopoly Junior right away.  He is proud that his skills have advanced to the point where he can play and also be the banker.

As I graded papers tonight, I listened to Ben and his dad playing Monopoly in the background.  They talked, laughed, groaned at times, and cheered each other on.  It got me thinking about the many benefits that I’m already noticing from game night.

So here they are (in no particular order)…

1)   Games promote family bonding

During the school year, our family has precious little time together during the week.  After homework and dinner, we have a couple hours max before bedtime.  Too often we spend this time on our electronic devices (the boys on their ipads, me on my laptop) rather than conversing with one another.  Game time gets us at the table, looking at each other, and talking to each other.  No cell phones allowed.  This screen-free time is something our whole family needs.

2)   Games encourage turn taking

Last year, Ben’s speech therapist told me that board games are a great way to practice turn taking, which is one of Ben’s goals.  I remember walking by during a therapy session last year at school and watching Ben’s small group playing a game.  During another player’s turn, he was completely disengaged, staring off into space or fidgeting impatiently.  Now during games Ben is very curious to watch other player’s turns, because he is learning that each player has a role in the game and that other players may make a move that could potentially help or hurt his play.  For example, when we play Trouble, I may roll a six and knock him back to start or I might land on his space in Monopoly and give him money.  Turn taking also encourages patience.  We always roll the dice to see who goes first.   Ben is becoming much better at waiting for his turn.  He knows the order of play and, while he might be excited, he rarely becomes agitated when another player takes his turn.

3)   Games teach critical thinking skills

I recently read a very thought-provoking article that talked about how we aren’t allowing children enough time for play.  We forget that play can be a form of work.  Even though I harbor a guilt that I’m not practicing sight words, reading, and math skills enough with Ben at home, playing games helps to build his academic skills in a fun and creative environment.  Monopoly is a great game for encouraging math skills.  He gets practice with counting money, dice reading (called subatizing), strategy, and literacy (reading those Chance cards).  Games like Scrabble Junior also encourage literacy and spelling, while the game Trouble fosters strategic planning while also teaching him to deal with unexpected setbacks (aka getting sent back to start by Mom).

4)   Games foster sportsmanship

When we first started game night, Ben (like so many children) had a difficult time losing.  He would become very upset and would want to play again immediately so he could win.  We’ve used game night as an opportunity to practice being good sports.  After each game, we shake hands with one another and say, “Good game.”  We talk about how sometimes we win and sometimes we lose, and this is okay.  I’ve seen a dramatic improvement in Ben’s ability to cope with loss during a game, and I hope this transfers to other areas of his life.

5)   Games lead to language and communication

There is a saying that “learning flows on the sea of talk”.  As we play games, conversations just seem to happen naturally.  There is the language and conversation that springs from the game (“Can you hand me the dice, please?”) but as we play, we also talk about school, work, and life.  Game time and talk time seem to go hand in hand.

6)   Games teach empathy

Ultimately, there may be a winner and a loser in a game, but that doesn’t mean that we can’t feel for the other person when challenges arise.  We feel bad for Dad when he gets the “Go to Jail” chance card.  We laugh but also say sorry to Mom when we send her back to Start in Trouble.  The struggles and pitfalls that arise in a game give kids an opportunity to not only practice handling these challenges but also to respond in caring ways when they happen to others.  All great preparation for the real world.

7)   Games promote risk taking

Games allow us to take risks in a safe environment.  We can spend our money to buy tons of properties in Monopoly and see if we can make our fortune, and if we lose it all, at least it's only Monopoly money.  We can sit in that precarious middle area in the game Trouble, the place where we may get knocked back to Start or potentially save tons of time get Home much more quickly.  Games provide opportunities to become characters and try out scenarios that we don't encounter every day.  It also gives kids practice with adult skills like managing money and making grown up decisions.

8)   Games teach us to follow a set of rules  

I come from an extremely competitive game playing family.  As a child, Monopoly games could last well into the night.  There were many occasions when someone would have to pull out the rulebook because of a dispute.  And then there were the house rules.  In Monopoly my family agrees to put the jail bail money and other “mad money” in the Free Parking space while playing Monopoly.  Learning to follow a set of rules is an important skill.  Ben not only follows the rules but he enthusiastically enforces him.  He's only beginning to try to "bend" the rules, which is quite humorous to watch.

9)   Games help to build fine motor skills

Whether it’s rolling the dice, moving the player around the board, or putting a card on the bottom of a pile, board games help hone fine motor skills, and in some cases, gross motor skills too.  (Ever tried to pop that bubble on the Trouble game?)

10) Games are just plain fun

Life can be filled with serious moments, but game time is fun time in our house.  Ben laughs with delight when he lands on a good space, squeals with glee as I give him money for landing on his property in Monopoly, and hoots when Daddy goes to jail.  Ben has even invented his own special rules, like singing the Happy Birthday song whenever anyone gets the birthday chance card.  No wonder he wants to play games over and over again!