Wednesday, August 7, 2013

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?

4 comments:

  1. Princess BubblegumAugust 7, 2013 at 1:33 PM

    Love you Lisa! You're a great mama!

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  2. Thank you lisa. I'm seeing similar signs with my 3 yr old "M". As you know her sister "K" was dx with ASD after an almost 10 yr battle. She is dx with SPD, but now I'm thinking HFA also.

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  3. Lisa, I would say that you are probably a little more informed than the general public and noticed that something was going on. We had no idea what was going on with our son when he was that age - we thought for sure we were doing something wrong or he was just a very weird kid!!! We really didn't know what to do or where to go for help. Once he went to pre-school there was someone there who was brave enough to tell us that something was up and where we could go for help! I never felt so helpless in my life! He was diagnosed at age 4 and he is now a sophomore in high school! At that time, kids weren't getting diagnosed much before age 10 so we are so glad that it was figured out when it was. I have seen many now being diagnosed before age 3 which is great! It has been a tough road but he is an amazing kid!

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  4. Yes, Jackie! I love to read and having worked with children living with autism before, I knew what I was looking at. I am very happy that medicine has caught up with things and children are getting diagnosed early. Early intervention really does work and it is wonderful to know that more children are able to benefit from it. I love that your son is now in high school! As a parent of a little one, I always find it encouraging when I hear success stories about children/adults like her. Always a great feeling!! Congrats to your family for working together on your own dungeons. :)

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