We don’t sleep much over here (that’s for another blog, another time). But when I do sleep, I sleep hard, I dream and I sleep walk. I’ve never been a dream journal sort of girl but I do remember and unpack them the next morning.
A recurring type of dream that I have been having the last year or two has to do with waves. And not just lapping at your ankle waves, but the big ones. The scary ones. The destructive ones.
In one dream, I was at an amusement park type of place with Z. We were walking in an area that was “in construction” and there was this huge lined pit. Of course, Z ran from me and fell in the pit. As I was trying to figure out how I was going to get him out of there, I noticed the pit was connected to the ocean and I could see big waves approaching. I was reaching for him and yelling that he had to hurry. I woke up before the waves actually came…
In another dream, I had just bought a new dream house. It was a futuristic type of house with an ocean view. There were long hallways connecting the houses that were all windows. People would walk along these hallways and watch the ocean. There were areas that reached out towards the sea and people would gather there on stormy days. This day was one of these stormy days. I was walking along the hallways and then noticed that the waves were larger than normal. I told everyone they should run for cover but no one moved. I ran back to my house and then the waves started hitting my windows. Again and again and harder and harder until I woke up…
There are a multitude of these types of dreams. Waves approaching with potential danger. Everyone is always acting like nothing is going on and I am running around trying to warn them.
Now, as I said, I am not a dream journal gal. I am not a “dreams speak to me” gal. But these do show me the anxiety that lives in me at all times. As my husband says, I am “always on”. This is the “PTSD” that special needs parents speak about. We are always waiting, always watching, always warning. We know our kids, we know the signs, we are always ready for things to go awry.
The most important thing to note here is that everyone else is going about their business. They are enjoying their lives, hanging out in the “lookouts” watching the beautiful waves. And we are there running around, looking frantic, trying to warn them of the impending doom. In my experience, we look like we are crying wolf.
You have heard me explain about Z’s meltdowns. I’ve talked a bit about the warning signs. I talk about my hesitancy to leave the house with him. We may find ourselves at a restaurant and appear to be normal but no one takes notice of just how many things I have stored away in the backpack under the table. The extra snacks in the event he doesn’t like the food, the iPad everyone will give me bad looks for, the books, the crayons, the toys, the candy, the extra clothes in case of an accident. This is why things went “good”. Not because Z doesn’t have behavior issues, but because his parents have figured out how to “look normal”. We time when we go to the restaurant to avoid the crowds or people that would be annoyed with the kids. We review menus to ensure there is something that Z will eat. We do not order appetizers or dessert because we need to get in and out as quick as possible. And we watch him and react to the smallest thing we may see.
Yet through all of this pressure and anxiety, we so often get comments of “Z did so great!” and “I don’t know why you don’t go out more, he did fine”. And yes, we are not arguing that he may have done a great job that day. We will certainly celebrate this small win as we so often do. But the amount that we lose of ourselves in the anxiety is too much to handle at times. We come home exhausted, envious of everyone else who were able to enjoy themselves without all of the preparation or anxiety. Rather than feeling rejuvenated from the good time, we feel more of an outsider trying to fit in.
And while I am trying to keep a smile on my face while keeping my son calm I am feeling the stares. When Z was small, people would just smile and roll their eyes. Just another young child acting wild. But now Z is the size of a grown man. That is scary and I get it. If the tables were turned I would be looking as well to make sure I wasn’t in danger. And while I have built a strong exterior and can ignore most of the looks I get, it still takes a toll. It adds to the anxiety because you are just waiting for someone to say something rude. You are waiting for your kid to really have issues which would only justify the looks.
But special needs parents don’t give up that easy. They don’t back down when there are hard times or difficult people. We will continue to try and enjoy our family amid the stress and anxiety. We will push those feelings aside. At a later point, we will drop our shields and cry on our kitchen floor but no one sees that. To the world, we wear that shield proudly. We are praised for the amazing work we do. But people don’t know the cost of that praise and I want to bring awareness to that. Through everything, we see the waves on the horizon. We watch and we wait and we warn.
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Tilted Axis 