I cried twice today, so far. I am visiting the so-called 'happiest place on earth' and I have cried twice! Happiest place on earth? Maybe if you are the kind of person that wants to get engaged, married, honeymoon and pop out your first born here. For the rest of us, it is a slightly worse version of what you might expect. Don't get me wrong, most of our time here we are happy and smiling and spending all of our hard-saved money on the souvenirs you can buy at my next garage sale, but there are moments that test me. Like, the moment at Seaworld today when Kate decided to attack my face because the "Shamu Show" had music that was far too loud for her little ears. As I took her out of the show, she slapped me over and over until I pleaded with her stop and then she split my head open with her 'Dolphin-Trainer Barbie." Relax, it was minor. So minor that I can't find the cut, anymore. But, I cried. I pulled my sunglasses down over my eyes and watched her dad whisk her off and I cried.
Next, things got fun, and Disneyish when we made use of the disability pass (more on that later) and "virtually waited" two hours to go on the 'Antarctica' ride. Both of our girls absolutely loved it and that made me beam. I got a taste of what the advertisements promised!
After we made it through the park we decided to head home. Kidding, Kate demanded that we leave immediately, and we know better than to argue. Grace was happy to go home with the promise of a swim at our resort. We arrived home, with Alex's expert driving (I swear he could drive anywhere with ease) and headed for the pool. Soon into the swim, Kate told me to "Shhhhhh", and for Kate that is code for: "I am pooping right now so get away from me!" I immediately grabbed her out of the pool and ran for our room because if you are a parent you know how well swim diapers manage poop. She screamed and clawed and spit the whole way. She was pissed and she wanted the entire resort to know it. When I finally got her back to the hotel room I painfully placed her into the beautiful jacuzzi tub built for two that sits in the bedroom of our condo and rinsed her off before a nice warm bath. She screamed until she was changed and swaddled in a blanket and then I cried one more time.
I really don't want you to think that I am unhappy or ungrateful for the luxury of spending a week at Disney with my children. I just want to give you a true picture of how this week will go for a little girl with autism and her family.
At the moment, both of our little girls are snuggled in the bed beside me sleeping peacefully and dreaming about a better day tomorrow.
Alex is watching football and I am murdering a bottle of wine. As it should be.
Here is our list in order of importance:
1. Autism awareness and acceptance throughout the world, etc. etc.
3. Piles of money. (Literally, piles of it)
4. The reflexes of a ninja when little teeth come at us.
5. The strength of a small child in a full on meltdown when our child is in a full on meltdown.
6. The restraint of a monk when parenting advice is offered at the grocery store.
7. The patience of a Saint to watch Toy Story/Ninja Turtles/Thomas again and again.
8. The liver of a champ and the metabolism of a teenager to make it through this holiday.
That should do it, Santa.
Autism Parents Everywhere
Oh, that concert. That Christmas concert. It has filled me with delight and dread and guilt and I haven't even attended it yet. Is this how all you parents of exceptional children have been feeling all along? Sick with worry that your child will stand out more than every other day? Have you felt sad that they might find discomfort and even pain in what is supposed to be a celebration of the season? How cruel a paradox is this concert? I know that some neurotypical children will pick their nose and cry instead of sing like angels. When our children act strangely they will draw attention, yes; but that attention is not what makes this concert hurt. The attention will be kind and positive for the most part. The audience will fall all over themselves to support this inclusive little gang because people, for the most part, are pretty cool. The problem is the feeling you get inside when you prepare your child for an event and you realize that you have lowered your expectations in fear and the guilt that comes along with that can be paralyzing. Seem dramatic? That's because it is. Do I love celebrating every milestone Kate reaches? Of course! Do I immediately compare/wonder/imagine other scenarios? Yes. Shamefully, I do. You don't? Tell me your secret. I don't want your kids. I don't want your version of family. I want mine. I just wish I could manage these thoughts.
So, tonight I will take Kate to the concert that Alex had to convince me was a good idea. Oh, how difficult it is to practice what you preach. I know the whole room will support whatever way she is able to participate in this event. It is not their expectations that I am worried about. It is my own. I won't post this until I have an update for you. My precious Kate will steal the show, this I know. I hope I can get out of my way long enough to enjoy it for what it is. Her special night.
She rocked it. She owned it. My heart burst with pride and not once did I let those thoughts of what might have been cloud my brain. Kate is teaching me so much. I won't write another word because this video speaks for itself:
How come you only eat beige foods? I think you might be malnourished and your parents need to force you to eat something with nutritional value. I would make my child sit at the dinner table until she ate what was in front of her! You sound like a spoiled brat to me. Maybe, your terrible diet is half of your problem.
The Surgeon General of Stunnedville
Dear Surgeon General,
First, let me be clear. My only problem is that you had enough time to kill between your hot yoga and learn to knit classes and it gave you reason to speak to my mother. Secondly, I eat a very specific diet for reasons that are sensory in nature. I find the idea of eating an orange revolting. The smell makes my eyes sting and the texture turns my stomach. The colour of the green beans on my plate forces me to look away. Furthermore, when there is pita bread on my plate I can eat it. When you add strawberries beside that pita bread you have changed both foods as I am only comfortable with one food at a time. My parents have already spoken with multiple specialists in the field of limited diets and autism and they all agree that I am doing just fine with the current food expansion program that I am on. My mother sneaks powdered vitamins and omega 3s into the baby food that she still feeds me at the expense of looks from people like you. If you would like to learn more about my diet please feel free to click here. I likely have a better diet than you because clearly you have eaten something that has turned you into a righteous asshole.
Why do you still chew on baby teethers? I knew a girl who let her child have a soother until he was four and it was absolutely ridiculous. All the moms at playgroup talked about her as soon as she left the room. You'll never see my son doing something so foolish. Children should be weaned from baby items like tethers She isn't doing you any favours by letting you hold onto such a bad habit. Why don't you start breastfeeding again, instead? At least that would prove that you have a good mom.
Someday, in the future, I am going to make friends with your son's wife because she is going to need someone to drink with. Otherwise, you should know that I do not chew on baby teethers. I chew on very chic chewelry. It is jewelry that allows me to work out some of the oral sensory issues I have. I often have the overwhelming need to bite down and rather than hurt those around me I have learned to chew some of that anxiety away on my very hip collection of chewelry. In fact, as I read your letter I had to immediately reach for a piece because otherwise I may have bitten right through mom's laptop.
Why do you choose to play alone? Sometimes, I feel bad when you don't choose to play with my daughter. She did say she would let you be Ken in her Barbie game. What more do you want? Do you not like her? I really want to tell my friends that she has a friend with special needs.
Sister Mary Catherine of Suburbia,
I choose to play alone because I am independent and strong and the social conventions that rule your anxious world don't affect me in the least. I like your daughter. She is just not into Ninja Turtles yet. Her tastes are more freshman right now. When she becomes more sophisticated we can play turtles together. I play alone because I am a honey badger. If you don't know what that is, please click here. I like being a bad ass. It makes my parents smile. They know I will be fine. I hope you don't share your anxieties about fitting in with your daughter. She is pretty cool herself and I hope she stays that way.
P.S. Could you please leave the little deaf girl alone. She isn't interested in being checked off your good deeds list either. She'll friend your daughter should she see fit.
Why does your mother give me dagger eyes when I am only trying to offer sound parenting advice at the grocery store. If my child was screaming for the apples in another person's cart I would take him directly out of that store and home for such behaviour.
Mom of the Year.
Dear Mom of the Year,
My mother is well aware of how you would handle the situation. She has been told multiple times by other 'Mom of the Year' recipients. She chooses dagger eyes as a response because to explain to you that you are making matters worse is futile and bargaining is not an option when I am experiencing a meltdown. During these moments I am unable to receive or express any level of comprehendible communication and I get stuck on the object of my intent. My mother understands that she will serve me best if she helps me ride out the emotions until I can become calm enough to move on. If you would pay attention you would see that she usually does this with a strong hug and some redirection and I will soon melt into her arms for comfort and rest because these moments take a lot out of me.
Why do you speak in jibber jabber? My daughter is younger than you and she was speaking in full sentences before she was even born.
Future Harvard Mom
Dear Future Harvard Mom,
I speak in jibber jabber because when I get very excited or very upset I lose my ability to communicate verbally. It's almost like when you feel so inadequate you can't help but lose your ability to tell the truth. We are very impressed that your daughter is so advanced. I hope she never dares fall of the pedestal. It would be a long way down with expectations like yours.
Why do you obsess over things? Why can't you move on. Come stay with me for two weeks and I will straighten you out.
The world can be confusing and scary when communication and socialization are not intuitive. I find much comfort in the things that I do understand. New and unpredictable situations can be overwhelming so I will often seek refuge with known routines and items. Furthermore, I do enjoy learning every detail of a preferred item or topic because I love things with an intensity that will allow me to master the knowledge of whatever I eventually choose. As for your kind invitation, I would need less than one hour to straighten you out, but I am far too kind to make such an offer.
Our first annual Sensory Santa was a huge success. Thanks to all who came, all who volunteered time and money to make the event happen and all who consistently read our blog and support us with kind words. Many of us got the coveted picture you see here. Some will try again next year. We are proud of our efforts and we are already thinking about how we can make it even better next year.
Please be kind this holiday as many children will have sensory issues around more things than a visit to Santa. Click here to learn more about this topic.
Also, this is my Christmas card. I am giving myself a break this year.
Grace and Kate's mom. (Shanell)