There are times in my life when everything goes along so smoothly that I almost forget. I forget she is "different". I forget that her brain doesn't work like yours and mine. So this past fourth of July, I was all excited to celebrate as I always do. We spent wonderful time together with family and friends and were all revved up to watch the fireworks. I prepared the kids in the sense that it's loud noises and big lights. Completely spaced that this is a bit much for autistic children. And then BOOM! They began. Friday night, sitting out in a windy parking lot, looking up at the sky. She screamed. No, this wasn't that beautiful scream of glee and delight that so many children and adults let out when the beauty of fireworks are displayed. This was complete panic. She started swishing her head back and forth in the three point five seconds it took me to jump up and grab her. So began a very long and challenging evening. I picked her up and she was completely rigid. This is typically how her spells begin, however, I have never had her so rigid that it took all of my adult might to get her bent in half. I have been taught to bend their legs at the knees, and that usually relaxes them. It was a physical impossibility to do this to her body. She dug her tiny little fingers into her legs and squeezed. This isn't a normal response. She squeezes so hard that blood pours out. I pulled her hands away, and kept trying to soothe her. She put them into her mouth and started biting. One hand in her mouth the other covering her ears and her rocking head. She was crying. A cry I honestly have never come out of her. Completely rigid and yet shaking uncontrollably. I pushed her head against my chest and started rocking her. All of the "training" stuff wasn't working. So I resorted back to rocking her, which helped when she had the swine flu. No such luck. Didn't work. I rubbed her back, I paced her. I sheltered her from the noise and lights. Nothing. It was like she wasn't there. Like she couldn't hear or see me. Like she had been removed from this world and was now in a completely different place filled with terror and horror. To watch your three year old go through this...
I held her for hours. My arms were completely aching and broken from exhaustion. My husband kept asking to take over. I appreciated his desire to help but he hasn't been through all the training stuff, so to try to explain to him would take too long and could possibly cause harm to her in the meantime. And I was blessed, God gave me the strength to endure. Honestly, I didn't even notice that my feet were swollen to twice their size until I fell into bed and noticed them then.
In those moments, what I normally adore, became my enemy. I hated the fireworks. My mind drifted to the mothers who hold their screaming children while ACTUAL bombs are going off. And I felt horrified for them. How many women have endured moments like that? I was blessed that I could hum to her and soothe her and know that she would be safe and that this would end. What is it like when you can make no such promise to your child?
I love my little girl so deeply. I do not understand what goes on in her beautiful mind, but she has a soul that is amazing.
Since that night, she has been awful. Completely withdrawn, disconnected. It is a struggle to get her to talk (she is barely above a whisper) and she doesn't answer when you ask her a question. She acts afraid when my husband or I call her to come to us. It is almost like that experience was so traumatic for her, that she is in complete fear of it ever happening again.
She is so beautiful. I would give anything to save her from this anxiety. I want so desperately to prevent it from happening to her again. I felt so helpless, but yet so blessed at the same time. I felt helpless because I couldn't bring her out of it. But blessed because I was able to be there beside her, holding her, doing everything I could think of while she endured it. I am blessed because she exists to begin with.
I would give my life. I would give it in a heartbeat, in a second, with no thought or hesitation. How blessed am I to be in the presence of such a beautiful person?
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