I am going to make a suggestion and I want you to stay with me here. When you first hear it you may have a hard time holding yourself back from closing this browser. Trust me, I have good reason for the proposal I am about to make.
I want you to take your family on a cruise.
Families with autism and other disabilities both cognitive and physical should start saving and sign up for a week on a ship.
I know you're shaking your head. I know you are considering sending me an email detailing all the reasons that this would be absolutely impossible for you and your family. You might even remind me of how difficult plane travel and car travel have been. You might detail vacations, in the past, that have left you drained and with resolutions to never leave your front yard again. I know. I have been there. I will be there again.
Before I begin, it is imperative that you know that I have received absolutely NO remuneration, discounts, or perks to tell you about this news. I spent some time on the phone with some really progressive people discussing the following:
Royal Caribbean, the cruise line, is certifying its ENTIRE fleet of ships to be AUTISM-FRIENDLY!
Got it? They are not offering an autism-friendly cruise. They are making every single ship they own autism-friendly. So, instead of saying we are going on an autism-friendly cruise, YOU CAN SAY: "WE ARE GOING ON A CRUISE."
Do you see why that is important? Do you see why this means a lot to us?
Here are some details:
Royal Caribbean has been working closely with Autism on the Seas for seven years.
They are providing their staff with training and modules on autism awareness.
I don't mean to raise my voice, but it's been a long time coming.
There are pagers to take when you drop your child off at an activity, so you can go have a drink....I mean...exercise.
There is an toy-lending program with appropriate toys.
There are ability groups, rather than age groups.
There are social Stories.
Can you cope?
Do you see why this is so great? Instead of making accommodations to include us, they have simply decided to INCLUDE us. At school we call this approach Universal Design. I am so pleased that Royal Caribbean is taking these steps.
So, while you are cruising along enjoying sensory-friendly movie screenings and a GF/CF menu please think of me because I'm still saving.
When Grace was not yet two, she spoke in full sentences. She had beautiful insights into the feelings of other people. She sat like a tiny doll in any restaurant we chose and we relished in telling people these very things.
If I could, I would travel back in time and tell that smug version of myself what a righteous ass I appeared. I would explain that not everybody's baby turns out this way and who the hell did I think I was pointing that out at every turn.
Did I tell my anecdotes at parties where other moms sat quietly listening and fretting because their child had yet to utter a word? Did I find excuses to show off Grace's loquacious ways? Of course. I would have hated me.
When Kate came along it was especially troubling to watch her miss one milestone after another when compared to her sister who easily reached and surpassed the lists in those baby books (which can be equally as awful as I was).
It hurts like a son of a bitch to feel your gut wrench when your child doesn't pass the standardized tests in the bullshit baby books but what hurts even more is when thoughts of what was once such a source of pride about your other child can now bring you to tears in comparison.
Do we really need other mothers to point that out to us when we are already so hard on ourselves? How kind they all were not to speak up when I bragged about my talking baby.
I won't say I am done comparing my girls. I will say that no one, not even me, can set a standard for my children, or yours.
So, tonight when I changed the diaper of my almost four year old and tucked her into bed after reading her a board book about colours, I kissed her forehead and told her she was perfect because I know she is.
I know I owe you some reality. My social media mentions have been of the 'feel good' variety lately and while there is nothing wrong with that for a short time, it is crucial that our community share authentic experiences for the purposes of education and solidarity.
I wouldn't call myself an "inspiration pornographer" so to speak, but I'm admittedly enjoying watching the 'likes' climb on posts that have been a tad curated, if I am being completely honest.
So, in the spirit of sharing the bad with the good, here is a laundry list of reality for you:
1. I cried filling out Kate's Teenage Mutant Ninja Turtle Valentines for her because I don't know if she has any friends.
2. I have been 'phoning it in' at work lately because sleep has been elusive.
3. I've hit my heaviest weight, ever.
Don't worry, I am not depressed. I just feel it might be irresponsible of me to share only the good. Who can relate to that? Certainly not me.
Yesterday morning was rough. The 'I cried all the way to work' kind of rough. I always save my tears for the car because it is the only time I am alone. Is that dramatic, or what? Anyway, I won't detail our morning for you because it was pretty typical but it took more than I had and I lost it, a little. I swear this story gets better.
The day at worked passed as usual but I was unfocused and feeling a bit defeated. I can't tell you exactly why. The brutal winter we are having? Sleepless nights? Worry about saving the money to get our family to New York. Whatever it was, it was winning and the day was getting way ahead of me. I was relieved to see its end.
As I drove home, I decided to check the mail. Now, forgive me for being cryptic here but It has to be this way. Inside was a letter addressed to "The Mouland Family". I threw it on the counter when I got inside and forgot about it until I had the girls settled with a snack. I noticed there was no return address and the postmark held no information either. I opened it and found a note and gift; a gift so generous that my hands were shaking. I won't tell you more (I guess I couldn't if I wanted to) because this person went to a lot of trouble to remain anonymous. I just needed to let that person know that their gift arrived safely and we are beyond grateful. We read the rules and we will honour your wishes.
Of course, in the spirit of paying it forward I will spend today dreaming up a way I can make someone else feel the way I do right now.
Grace and Kate's mom. (Shanell)