We've Been to Holland: ASD Children and Parties

I was nervous. Banshee had been invited to her very first bday party. This isn't a big deal but it was her first party without the Pixy accompanying her.

Naturally, we were both excited under the nervous shakes.  We don't get invited to lots of events like this, so I bought a cute gift for the b-day girl (a crayon roll from Amyzing Creations on etsy), added some bonus things (a couple coloring books, stickers, a princess wand) and put it in a cute bag decorated with Banshee's artwork. It was a gift we were both proud of for different reasons.

The day of the party came and Banshee asked Daddy to take her to the party. It was being held in Banshee's ballet school, so we didn't have to worry about it not being familiar and risking her shutting down on us. I reluctantly let them both go, nervous that Banshee would do ok and sad that I wouldn't get to be there to experience it with her.

I'm being brutally honest when I say that I worried that Banshee wouldn't participate, wouldn't want to eat the party food, would decide the sound was too loud and rock with her hands covering her ears, bury her face in her hands because the light was too bright, and perhaps the most prevalent of all Bansheeisms: she would decide to spin. Banshee can spin for pleasure for hours if you let her. She says that if you want to feel what happiness is, then you need to open your arms and spin. While I agree with her, especially when the music moves one to do so, it can get a bit frustrating when everyone else is learning to do a silly dance as a party activity.

I did some laundry, I tidied up, I read stories to Cubby, did some homeschool with Pixy, organized a bit and ...still, no report from the party by the Sailor. What was going on? I had prepped Banshee on proper party etiquette, told her to try not to be shy, dressed her in pretty party clothes...did I do enough? I started to feel like perhaps I'd failed her somehow.

Right when I couldn't take it anymore, Sailor texted me this:

Enjoying the birthday party!

This is Banshee playing dress up and taking pictures WITH her friends because they were all
Pretending to be supermodels. Not on the sidelines, not across the room.....she was in the group!!! I was so happy that I started to tear up a bit.

I asked Sailor for a full report, to which he answered: She is having a blast! Banshee's party manners are great, she's engaging with everyone. A little shy for their fashion show, so she started to rock a little, but she did it anyway! So so proud of her.

I read and re-read the text. Wow. What a brave girl, to do the very thing that is extremely difficult for her: to be social. As I waited for them to come home, with Cubby and Pixy ready to cheer for her, I recited a powerful saying that most parents of children on the autism spectrum say: Today, We've been to Holland (from a poem describing a typical child versus an ASD child as countries/vacations) and it was a very good day.

My own game of 'dungeons'...

If you watch Adventure Time, or even just heard of it, you know that Finn likes to play a game/quest called "Dungeons" when he is bored. The game basically consists of finding a hidden dungeon and ultimately to solve the quest by finding the treasure at the end. Finn is usually successful at this game and can be quite OCD on the steps to solving his "dungeon" puzzle.

Why this random comparison? It is the one that best fits. For the last couple months I have been playing my own game of "dungeons" with regards to my 3 year old, Banshee. You see, Banshee began to show signs of autism when she reached her second birthday. She was very particular about the way she dressed, about closing doors, shutting the AC vents, what she ate, and the fact that she wanted to spin constantly. Because I had worked with children living with autism before, I knew the signs and knew that we needed to seek answers. Thus, "dungeons" began.

I would like to say that my quest was fruitful in the beginning, but that would be lying. It was anything but. The first developmental pediatrician kept referring to autism as the "a word", and while the doctor accepted that there were signs, her age was most likely the cause. I think the most frustrating part about all this was the fact that in that moment, sitting in the antiseptic doctor's office while looking at my child, I knew that I would have to play this part of dungeons alone. 

Enter my adventurous spirit and thirst for answers. I knew Banshee was a puzzle and we needed help to get the right tools to work with her--autism or not. Through my investigations, and with the help of some friends who were going through the exact situation, I learned that there was a program in Baltimore that provided early intervention to children who presented the symptoms of an Autism Spectrum Disorder (ASD). I set the wheels in motion, and after some testing to qualify (it is a research program), Banshee was enrolled in the Kennedy Krieger Institute's Early Achievements Autism Speaks preschool class. The relief I felt that I was on the right track was huge and grew more when the interventionists said: "You have no idea how big this is. Just by starting the process, you've already helped her." SCORE! 

It seems, that I had found the right dungeon. Now, I needed to find the right key to open the treasure chest that is Banshee. She was a complete puzzle and didn't fit into the categories that the diagnostics called for in a child with autism, but there she was presenting lots of red flags. It was disheartening to say the least, we just want answers, and they weren't that forthcoming. The good thing is that I was surrounded by other parents that were in the same boat and by the professionals at Kennedy Krieger, who kept comforting me with this saying: " If you have met a child with autism, then you have met only ONE child with autism." I'll say! 

Another difficult concept that as parents to a child on the ASD spectrum we have to learn, is that once you have  someone that is diagnosed with autism, your whole family is now diagnosed with autism too. You must all learn new techniques of doing things, routines, new approaches to parenting that seem alien but are so helpful, you tend to go through a period of time when you beat yourself up. Why didn't I think of that? The answer to that, is just that you are too deep to think clearly and it takes a lot to get to the point of being able to admit that. It was great to be able to share all of these thoughts with people, who wouldn't judge you for it.  I can tell you that all of us have grown through this experience with Banshee and even though she was the one receiving therapy to give her the tools she needs to succeed, we were getting therapy too.  

My dungeons game came to a stand-still as Banshee, even after diagnostic testing and visits with the professionals at Kennedy Krieger, remains without a diagnosis. She is too  much of a puzzle even for them! There is no doubt she is on the ASD spectrum, no one is sure where she is. I want to say that if I had remained the same as the beginning of this experience, I would have remained disappointed at the lack of answers. The me now, remains frustrated, but am more open and invite this game of dungeons to continue. I mean, do you really have to find the treasure chest immediately to count as a quest? Or do you count the work you have to do in getting the clues, in order for the real quest to be won? I think dungeons is different for everybody. The good thing is that we don't have to feel alone or need to do it alone. Sometimes, the best way to beat a dungeon of our own making, is simply to let others in to help us through the quest.

What "dungeons" have you experienced in your life (as a parent or otherwise)? What keys did you find that worked to open the treasure chests?