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It’s not one piece, it’s an entire puzzle

It has to be quiet, very quiet. When the baby enters the world, there must be no sound. His/her ears mustn’t be used right away other than to hear the very basic essentials used to bring such life into this extremely loud world. Only the essentials and basics allowed at any and all times. When wrapping the baby, wrap gently with patience and understanding. They feel everything. Every touch, every emotion, they feel it and they will remember it literally, forever. As your child grows, these same principals should be applied. Hold on, let me overwhelm you just a bit because where I’m going with this is nothing short of extreme. From the beginning of life, everything you do or say, everything you feel; sadness, happiness, fear, all are being recorded by your child and these are the building blocks being used to, well, to teach him how to be a human. How to live, what to say and when to say it.

In my experience, it seems as though when I’ve explained something intricately to Jake, he does fine. If I miss a detail, it’s like the game Jenga, it’s the piece that makes the tower fall. Take a kids birthday party for example, I would tell him we are going to a birthday party for Joel at the bowling alley. He would ask “so will we be bowling?” Yes, we will bowl and there will be cake and presents…”ok, cool.” Ok, cool right? No, it’s not cool, why? Because I failed to mention that the bowling alley would have music blaring through their speakers. Not cool because the table where the party is located just happens to be next to the kitchen where they throw dishes around…not cool. Had I forewarned him of these details, staying long enough to have a piece of cake may have happened more often than not. It’s these details, this information that to us is just, there but for him, it’s like paying for a specific haircut and getting something completely different, it’s maddening.

When Jake was around 9 years, he told me he thought he had Autism. Once again, this conversation began in the car, not sure exactly why that’s relevant but it has it’s value. I paused briefly and I think I replied with something like “oh yea?” pause, “what makes you think that?” His response was geared towards his jumping around but I remember going into my own mind while he was telling me this so I’m not 100% sure where that conversation led. I don’t know if he was just saying it because he had heard me mention it at the doctors or if he had done his own investigating and come to his own conclusion. Either way, I knew.

I’m not sure I even accepted anything was or is different with my son until recently. It actually was just before I started writing here, I was feeling so alone and I guess I have been mad, mad at everyone and everything for not helping me. I had to humble myself and realize, how could they help me? They have no idea what’s going on and even when trying to explain it, I hear myself and even I don’t completely get what I’m saying so how could anyone else.

I’ve found peace here, sharing my story. I know I’m not alone. But I also know, even with our large ASD community and all our commonalities, we all have a different story and this is where I’m going with the puzzle piece. While I admire the “missing puzzle piece” concept and am thankful for the positive message and enlightenment it has brought, I’d like to give my own theory. I think it’s an entire puzzle we need to put together and every soul on the spectrum is one piece of the puzzle. I think we all need to share our stories and that’s when we will begin to put the puzzle together. We have a lot of research and funding, we have the brains to put it together but we are not compiling the information correctly. I want to help, I want to help put the puzzle together so I will keep writing and I will keep sharing my life with my perfect boy. He is perfect ya know, so perfect in an imperfect world. Maybe that alone is the answer.

Much love, Jules

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