The hot summer days are so fun aren't they? Boating if you have a boat, camping, bonfires, trips to a favorite water hole, and travel is a big one in the summer for all. Our last two summers have not included much of this and I have had to back out of numerous plans that I would have loved to participate in. These things are getting easier with time and today we might even venture to the lake and beat the heat but in the past these things have created huge obstacles to either work around or just flat out avoid.
My son never used to respond to the word no and because of that my body became the word no. being a human shield was all I could do to create a boundary or protect him from things that would harm him. Day after day of doing this was exhausting and eventually I had to just pull back from certain events. It was never just the being a human shield though because many other elements played a role in the challenges of the day. My son doesn't have an off switch and I know your thinking, "what three year old does?" What I mean is he lacks the ability to turn his senses down when they are bombarded with the world. He simply cannot slow down once it's kicked into high gear and it takes over.
This is when he doesn't drink, eat, and won't even take a break to sit for a moment. Typically a child will think they are thirsty and stop to take care of that feeling. He will not and it's the same thing with eating. Another element to this bombardment is eventually he doesn't appear to hear anything at all. The wandering begins and my voice becomes irrelevant. Partner this process with a good mosquito attack and the fun stops. You cannot simply tell an autistic child, don't itch it and will go away and I knew that so avoided it ever happening. The only option I had was to simply go home even if I didn't want to.
Like I said these things are changing with time and things are slowly becoming more possible instead of impossible. Eating and drinking are still a challenge but my son is learning to cope with the bombardment on his senses and can manage longer now. Life is simply getting easier so yesterday when I was discussing this topic with someone who is close to us I discovered something that I know many parents face. The person said to me "I just thought you didn't want to be there." I will tell you when that was said I felt a bit like crying, so I did. How could it be the people closest to me in the past didn't understand I was doing what I had to do, not what I wanted to do? My worst fear while having to leave literally came true.
That I was rude, didn't want to be around, didn't like the people I was with, and that I was just boring and stuck up. I worried about that many times but also thought the people close to me knew why I was almost never participating or leaving early. I suppose in my head I thought everyone could see how challenging situations could be and then I realized I was doing such a good job of avoiding the challenges no one around me even realized what they were or just how things could really get difficult. Over the past year it slowly turned into me appearing to be a bitchy woman who leaves all the time and all I could think to that was....OUCH. Ouch because in all reality I cannot think of one situation over time that I really just wanted to leave but the amount of times I had to I can't count. I just had to.
To those parents who face this remember you might be doing such a great job at keeping the world calm for your child, the world has no idea how overwhelming it can get. To those who think a parent is just using autism as an excuse to leave or stay away you couldn't be more wrong. I don't know what people can do to make a situation easier for a parent to stay but I do know understanding what a parent feels is a huge step to helping them push forward feeling good about the job they are doing. I can guarantee you that understanding makes all the difference in the world. Sometimes it's even very helpful to miss a little fun and leave with them because isolation is an entirely different topic.
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