What if I have to go to the Bathroom?

We joined the YMCA today. I packed up a big bag with towels, extra clothes, beach shoes, and me and my 3 kids headed over for our first swim.

What’s the first thing that you do when you go to a place like the Y?

You go to the locker rooms. 

My special needs readers already know where I’m going with this. 

My kids are 11, a girl, and twins boys, 9. The boys have autism. They can’t go alone into the boys locker room, and I’m not allowed to bring them into the Women’s locker room. No one of the opposite sex over the age of 9.

Of course this makes sense- girls over the age of 9 don’t want to be naked around boys over the age of 9. It’s uncomfortable for everyone. So what’s a special needs mom to do?

I’ll tell you. 

Before we left, I had the kids put on their suits under their clothing. Then I do the same and make sure to wear easy on/off clothing. 

When we arrive at the pool at the Y, we aren’t allowed to enter the pool through the locker rooms, so I have to wait for an attendant to open the emergency door. We are also not allowed to wear street shoes on the pool deck, so since we can’t change them in the locker room, we change our shoes in the lobby. 

When we get through the emergency door we find a bench and undress in front of everyone, not a big deal, our suits are on beneath our clothes. At this point I allow my daughter a moment of normalcy and she goes to change in the women’s locker room. Our bag stays at the pool because, well, I can’t go in the locker room to lock it up! 

The kids all have a great time in the pool, but it’s almost time to leave and this is the part I dread.

On the pool deck is a small cubicle- basically a handicap bathroom stall with no toilet. The boys and I have to change in there. We climb out of the pool and walk past all the swimmers and onlookers and proceed to wedge ourselves into the cubicle. My daughter goes to the women’s locker room and they boys and I all cram into the stall, dripping wet. I help them out of their wet clothing and dry them off with very little room. I dress them, then I have to undress in front of them. They are less than an arms length away. 

What if they have to go to the bathroom? What if I do? I can’t. I’m used to this though- I was a mom of 3 under 2, a twin Mom and a Mom of disabled kids - I learned very quickly that I just can’t drink a lot during the day because peeing isn’t an option. 

The boys can’t be alone and the bathroom is in the locker room. There is a hall bathroom somewhere on the other side of the building, but that won’t help us now, half naked in a cubicle with other people swimming  right outside the door . So I change in the tiny stall with my boys right there and pack up the bag. Can’t put our shoes on yet, so we walk barefoot to the emergency door and let ourselves out. There we find a bench, I dry their feet and put their shoes on and then do the same for me. My daughter asks me what’s wrong because I’m sure I look frustrated. Why does it have to be so hard? Why can’t we just walk in and use the locker room like everyone else?

As we are leaving the staff asks how we liked the Y. We love it, I say, but what happens if I have to go to the bathroom?

She pauses. Quiet. Realizes that I can’t and doesn’t know what to say.

I guess next time I’ll have to bring my husband. 

Who will you choose to be when you see kids like mine?

We have all see kids misbehaving. Rambunctious kids at the grocery store, kids talking too loud in a restaurant,  bumping into you on the sidewalk because they aren't paying attention. Sometimes kids can be obnoxious. It's true.

What do you do when that happens? 

There are a few different ways people handle this. They smile at the parent conspiratorially. They look away, pretend it isn't happening. Or they glare, or maybe even say something to the parent or child to reprimand them.

What will happen when you see kids like mine? 

Since my kids were diagnosed with autism I have steeled myself to prepare for the rude comments to come. They are getting older, nearing age 6. Things that used to look like bratty toddler shenanigans are starting to look like flat out rude, unruly children. And while many people recognize things like jumping and flapping and loud outbursts of sound as autism, some truly don't. Other than a few dirty looks as we get in and out of the car parked legally in a handicapped parking spot, I haven't faced anything directly until today. 

So what happens next time you go to the mall and the kid in line behind you starts shrieking? Or the the kid at grocery is laying in the aisle yelling that he wants goldfish, or even worse, hits you in the butt by accident with a shopping cart?  

I want to ask you a favor. I know I'm asking a lot here. If you know me, you know that I have spent time with people with special needs since I was a teenager. Camp counselor, Special Olympics volunteer, babysitter, nanny, and friend. This population has always been important to me. Now I have graduated to parent of 2 kids with special needs. Whoever you are, if you were ever my friend, I ask you to please, be kind. Think twice before you judge in these situations. Your children will learn kindness from you. Your children will be teenagers with mine. They will become adults together. I may be asking a lot, but from my experience, the benefits are not one sided. There is no doubt my life is richer from the time I have spent with people with special needs.  

We were at mall restaurant waiting for a table.  Waiting isn't easy for my crew, but they weren't being belligerent, just jumping and flapping, making some noises in an already noisy waiting area. There was a bench with 2 people on it. On one end, a woman, on the other, a man. In the middle was a space. My kids decided to sit there. Lay there. Roll around there. We reined them in a few times. No doubt, we can be a bit of a spectacle, but at no time did we allow them to be rude. By the end of the waiting time, the woman had huffed and puffed and shot dirty looks. She yelled at my son after she got up and my son took her seat in the waiting area. Then when she tried to push her way back into the seat, his legs were spread out and blocked her from sitting. She sat anyway, and then yelled at me that he kicked her.  I apologized and told her  they were autistic.  She continued to yell at me and tell me I was rude. I wasn't very nice about it, I'll admit it. Her intolerance angered me. I felt shame. I felt shame for feeling shame. I thought about the lifetime they have ahead of them surrounded by people like this and I felt scared for them and sad for all of us.

My son moved over to the other side of the bench and hid his head behind the man sitting there. The man smiled at me as I removed my son from the bench.

That was the difference. That smile. The shared look of another parent, who may never have been there but was kind enough to make my family feel like everyone else.

Who will you choose to be?

Our cruise with Autism On the Seas

Our cruise with Autism On the Seas

Planning a vacation when you have small children is hard to do. When my parents, sisters and I (family of 17) decided we wanted to go on vacation together to celebrate our parents 50th anniversary, there were a lot of things to be considered. My sisters and I have 8 kids collectively, ages ranging from 4-17. While my sisters kids are 9 and up, I have the youngest crew, twin 4 year olds and a 5 year old. We needed to find a vacation that would suit all ages. We considered renting a house on the beach somewhere, but decided that having to cook meals and clean house would be overwhelming - not to mention that there would be very little personal space- a must for my crew, because 2 of my kids have autism, and they need a place of their own for down time. Sourcing a house of that size was difficult. We considered a cruise, but flying my family of 5, especially my autistic sons, would be challenging and expensive to boot. Fortunately my family was very understanding that some of the planning had to take our special needs into consideration. This was difficult for me. Being the parents of kids with special needs requires you to make things about you, hoping that other people will do what works for your family. It's uncomfortable for me, but it's a skill I have had to acquire in my role as Mom to kids with special needs. 

I took on the role of trip planner to be sure that the vacation we chose as a large group would work for us as a family. As I was researching cruises I found that we could cruise out of NY or NJ, which alleviated the need to fly. A big plus for us. I started researching cruises and narrowing down a timeframe that worked for everyone. I joined a website called "cruise critic", where I learned about different cruise lines and to see if any other cruisers had kids or themselves were autistic. The first response I got was from a person who told me about a company called "Autism on the Seas" (AotS). I was intrigued! I checked out the website and sent over an inquiry. They responded promptly. It was at this point that I hesitated. Did I really want my entire vacation to focus on my kids and their "disability"? How would this fit in with the rest of my family and what they had planned? I was nervous about how it would all fit together. The bottom line was that I was going to need help, no matter where we all decided to go. I didn't want that burden to fall upon my family, even though they would be happy to help. 

We decided to book our vacation through "Autism on the Seas" on a 9 day cruise with Royal Carribean. I can tell you now, it was the best decision I could make. The services AotS provided on our trip was the difference between a barely tolerable vacation and a great vacation. I'm going to describe the trip in detail and explain how and when this service was the most helpful to us. 

Arriving /boarding the ship

About 2000 people are trying to get on this ship at boarding time. It's overwhelming for anyone, but it is especially challenging for people with autism. AotS was there, holding up orange signs, easily seen and found by my entire party. As soon as they found us they were able to get us on a priority line, making boarding quicker and easier. What I thought would be a nightmare turned out to be much more pleasant than I expected. Not only that, but all 17 of us got in priority, not just my 5- so my kids odidn't feel singled out and my family benefitted from the situation. We even had a private muster drill after boarding! 

Meal times

If you have cruised before, you know how buffets are a free for all especially when it comes to seating. Think of the logistics. If you have are traveling with a person with autism, things like waiting for a seat can be very difficult. As a caregiver, you know that the idea of actually sitting and eating is almost impossible. With AotS, every meal we attended had a reserved section for seating. The staff either stayed with my kids while I made plates of food for them, or got food for them. They also helped attend to my kids so my husband and I were able to sit and enjoy our meal. This was so valuable and really made the trip more enjoyable for us.

Kids programs

Our ship had a kids program called adventure ocean. The ratio of counselor to campers is 1:25. This worked out fine for my daughter, but my boys need a little more help than that. AotS had counselors every day at camp, (respite), twice a day most days, so my boys were able to participate. This gave me and my husband a much needed break. (Hot tub time!) I wasn't expecting to utilize this service- the idea of leaving my kids with strangers sounded nerve wracking to me. Within a day or 2, the staff felt more like family. They also gave us a beeper so we could be reached anywhere on the boat. I was very comfortable with this arrangement. 

(Family time at the arcade)

Events

There are various shows and events that you can attend when you're on a cruise. The hard part is that there are so many people on the boat that things can get over crowded quickly. Because we booked with AotS we had reserved seating for many events. Each day we received 2 schedules. 1 provided by the cruise line, listing all of the events going on around the ship for the day. The other, a schedule provided by AotS, listing which shows/events that they had reserved seating time for meals and shows, what times AotS staff would be at the pool or at respite, or special events like private time on the ice for skating, water slide or rock climbing, sensory friendly movies, etc.  

(Private time on the ice)

(Private dance party)

Ports of Call

Wait, you want me to bring my kids to an island I've never been to? What does it look like? Can I use a stroller? Where's the bathroom? Is it autism friendly? Loud? Bright? Dangerous?

(Easily accessible beach in Bermuda, accompanied by AotS staff)

The staff at AotS knew the ports, so we were able to ask these kind of questions. They had already researched the best excursions to meet our needs, and they were there to help my kids in the water, take photos of all of us together, and just have an extra eye out in case of any darting or roaming that could occur. 

(Playing with the band in Haiti)

One added benefit that needs mentioning is that my daughter, who does not have autism, was able to get time and attention from us and from the AotS staff. If you have a typical siblings amongst your children with autism, you know that sometimes they don't get the time and attention they need. When I asked my daughter what the best part of her trip was, she said it was when her dad and I brought her to mini golf. We were able to focus on just her for a few hours while the boys were at respite. This meant so much to me!

(Rockin' an AotS tattoo)

I wasn't paid or rewarded for writing this review. I just really want to spread the word about  http://www.autismontheseas.com . They made our vacation possible and really fun. My kids had so much fun together, with us, and with the AotS staff. Cruising with autism isn't just a possibility, it's an awesome time!  While I worried that sailing as AotS members would narrow our experience, instead it made it more inclusive. We met other families that I will stay in touch with for life. That was another  huge bonus - other people on the cruise who understand the joy and challenges of daily life with autism. So please feel free to share my blog and my review with other families who might benefit from it. Also, please contact me if you have any questions!

Assume competence!

If you saw a little boy flapping his hands and jumping up and down, what would you think? If you called his name and he didn't respond, would you think he didn't hear you? Would you assume he didn't understand your words?

Just because you don't get a response doesn't mean they don't understand. I consider myself very intuitive when it comes to my kids, but that didn't stop me from majorly underestimating my son.

For Christmas my son received a Mickey Mouse tablet pictured below.

Often times with toys like these, both of my boys will press the same buttons over and over. "Stimming", what seems to be without a purpose to me. Garrett, who at the time was considered very limited verbally, was playing around with the toy, pressing the letters. It was irritating, like most of these toys are. I was ignoring him, playing around on my iPad, when I vaguely heard him press the letters C-A-T. I looked up and he glanced my way. He said, "Cuh". 

Hmph, I thought. He knows how to spell cat. Wow, he must have picked that up from a book or something.  "Wow, good job, G! That's right! cat!"

He went back to the toy, and to my amazement, he typed D-O-G. Then he said, "Duh". Before I could even get out a "holy shit!", he started typing away. 

Frog.

Horse.

Walrus.

Giraffe.

Disney Junior.

Mickey Mouse clubhouse.

I kid you not. I was jumping up and down at this point. The most he had ever said aloud was, "I want juice", but apparently he could spell! He could READ!

Until this day, I had no idea what he was capable of. I still don't know for sure. He's not able to respond to questions I ask, but that doesn't mean he doesn't understand the questions. It could very well be he just doesn't know how to answer. Yet. I do know that since this day, I treat both of my sons as if they understand exactly what is going on around them. I tell them what we are doing and where we are going. Every step I make, I explain it to them. I assume competence.

Some of you are probably familiar with Carly Fleischmann. She is a young woman who is autistic and can not speak. She communicates solely by using a computer. If you have a few minutes, take a look at this video. It discusses the moment when her parents realized that she could communicate. This is a great example of why as parents, teachers and humans, we must always assume competence. 

http://youtu.be/34xoYwLNpvw

Welcome to Schmypical!

Welcome to my first blog post. I'm new at this, so bear with me as I learn how to be a blogger.

I'm Tracey. Wife to a great guy, Mom to 3 awesome kids. My daughter is 5 and my identical twin boys are 4. The boys were diagnosed with autism at around 18 months old. This blog is going to be about lots of things, but mostly it will be about autism.

I have strong opinions. They may not be the same as yours. I welcome opposing views. I'm still very new to the world of autism, and my opinions are always changing. I will rant and go on tirades. I'll get preachy and I'll probably judge a little bit. Above all, I am hoping to change the way you see people with autism. Because even though there is a growing awareness of Autism,  acceptance is greatly lacking.

So welcome to my blog and happy Autism Acceptance Month!