What a wild ride autism had been for the past year and I can't count the changes both good and bad that have come our way, it actually overwhelms me to begin thinking about it. I stepped way back from the cause lately and as a mother and autism parent I am going through a transition with my feeling towards autism. Not my son but autism and how it impacts him because the impact on him has changed so much in a very short time. He is doing very well and constantly making progress. Daily he speaks more and every moment I watch him win is awesome, a lot of moments lately and we celebrate like crazy.
Yesterday we went to an event called Whaling Days in our area and what I watched happen will explain my transition and feeling towards autism. Whaling Days is a very crowded and noisy event that is packed onto the waterfront. There was a carnival, a band playing, helicopters taking off, street vendors, food vendors of every kind, and boats lined up on the dock. I knew this was an event that would be hard for him but at the same time he is missing to much of what is basically set up for kids and families to enjoy. Honestly I am missing it to and it gets old having to stay away. I want to be able to do family fun events with my son.
Here is what happened to him when he merged into the crowd. He lost all sense of safety, could no longer hear me, was startled by all the sounds, was running into people, was confused, and began moving extremely fast in all directions. Somehow I managed to get him to the pier because he loves the pier and we stayed on that pier moving constantly most of the time. The problem was the boats, people, and music stopped him from being aware of his surroundings. If I had not been right on him three times he would have gone off the pier and into the water. Not on purpose but from not looking where he was walking and running into people and objects. His focus was completely gone and what others saw as a high energy child that was excited was actually a child who could not calm down and was in a state of anxiety. He could not ride any rides even if he wanted to because he doesn't grasp the safety of sitting still and the movement would have terrified him. We could not get anything to eat or drink because standing in line in a crowd was not an option. We could not watch the band play because the sound was to much even from far away. You might wonder why I would even go if all we could do slow down and enjoy the fun. I needed to see how he would handle it and I sure was given a good look at how hard it is for him.
We stayed at this event for under an hour and on the way back to the van he began running in all different directions trying to find a way out of the chaos we had to walk through. If I touched him he grew upset and if I spoke to him I had to get right in front of him at his level and repeat myself to get him to hear me. Finally I told him "It's time to be a monkey" and he knows this means to climb on my back and hang on which he did. The van was only 2 blocks away and before we hit the second block he was a sleeping monkey. He was not tired one bit before we went but that short time of coping with the situation completely exhausted him and it was all due to what autism causes for him. Before he climbed on my back I could see he was loosing energy to even lift his legs and keep moving.
I have had people tell me autism is a gift or it is part of my sons identity but when I see him go through this kind of anxiety and struggle I do not feel autism is a gift and surely don't feel that stress he feels is part of who he is. My transition as is mother is frustration that he has no choice but to face the world this way. My transition as an autism parent is autism hinders my son from being able to let go and just be a little boy at times. I know my son was not born with autism and we all know there is an environmental trigger in many cases caused by human beings not mother nature. It flat out angers me to think about all the families and children who go through this same scenario and it might not have had to be that way. I love every single thing about my son and the fight in him is amazing, inspiring, and he is my teacher but I don't think I will ever have to explain to him how autism impacts him. He feels it and he is going to spend most of his life showing autism who is in charge. he worked very hard to do that at this event and prevented himself from breaking down at three years old. That fight in him along with me understanding his reactions to a stressful situation is what is getting him through. He consistently fights with autism to be able to do that and he consistently fights with autism to show me his own identity. Autism is not a part of his identity, it is something he is at war with and with the right understanding, help, and encouragement he is going to kick it's ass. Slowly and it might takes years but I have no doubt he will.
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