The introduction: I am a Christian (don't be scared, I only preach when I am really angry). I am a Mom (Olivia's mom is my chief title). I am a 44 year old woman (yeah that one gets neglected way to much but I am working on it). This blog is actually the start of a book that I am writing. The names were changed not to protect the innocent but because I don't want to be sued. I know corny but me. A friend finally convinced me to turn in my notebooks to a publisher she knew and the lady actually liked it. Her request was for me to try the online format because she wants to develop a little mini podcast. I am excited and nervous these first couple of blogs will be really rough but here we go...
Family is all you have. My aunt repeated this to me most of my life. She believed in it. She lived it. Now she also was quick to add a codicil of FWFYF (if you don't know what that stands for well sorry).
My sister called me at 11:30pm at night immediately I sat up and thought one of two things she's bored and had a little of the happy juice or my grandmother. Immediately I received the standard happy greeting we use between each other and I knew my grandmother was fine. As usual Cupcake as I call my twenty year old ASD low functioning non-verbal daughter was in the middle of the bed deeply into her barney videos and I was running a list in my mind of the hundred things I could be doing besides laying in bed. Her next statement shocked me and had me running for the good stuff. Now, I would never admit it but for years I admired my sisters ability to avoid marriage like it was a contagious disease and still remain in a great relationship. My she hero had fallen victim to the hype. Yet, I was happy for her if she wasn't joking. I listened for her long time partner to confirm that all was well and he said it was true they were finally marrying after more than a decade. Now my sister was tying the knot.
The next day at when we both are sober, she calls again and we discuss details and who will be attending. I could tell by her voice she wanted to ask the question, the elephant in the room, Autism. No cupcake will not be coming with me. Followed by the unspoken I am sorry and the guilt. Guilt that my child is not able to be at an event so important to her aunt. The guilt that some how this was my fault. I start to speak and try to explain, my sister quickly cuts me off with an I know you don't have to say anything. Then the silence, the horrible silent communication between sister first come the angry thoughts from my sister "Why can't you bring my niece? I don't care about those other people". My silent response to our silent argument, "This is non negotiable it would be to hard for her. I love you but I can't put her in that environment". We have had this silent argument many times Christmas, Thanksgiving and vacations. We both know how this ends, Autism wins. Our actual verbal conversation starts again, my sister says "Well we will just have to so something together later". My sister doesn't like to lose and we will continue this fight together because my sister and I both know she loves her niece.
I want to explain something before all of the pro inclusion people start coming at me. I take my daughter out. She goes where I go, however I know my child's limits. Cupcake has had to suck it up through a lot of Walmart trips, vacations, plays and even some dates with me. Hiding her autism is not an option. Everyone in my life knows and adjust to the fact or I just cut them off. This particular event will be held on a boat and with the escape and wandering issues and no easy way to get out of the situation if a meltdown happens, the set up is all wrong. Besides this is my sisters day not autisms day and if my kid was present I would be on red alert and not giving my sister my support. Oh did I mention Cupcakes new trick she likes to flash people. Especially when she is nervous or upset. Wouldn't that give the guest something to talk about. We also have food issues my kid will only eat a select number of foods. I cannot carry a bag of fries in a purse the size of a donut. You always get these so called experts who will recommend immersing the student in with others for socialization purposes. To tell you the truth large crowds make me anxious, I avoid them like the plague so why would I force my hyper sensitive daughter into that situation. Fight or flee would surely take hold of us both.
Autism is like a thief. It steals these moments of family and of normalcy from a families life. Autism the elephant in the room.
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