So the other day Bailey’s school had their first fire drill of the year. As anyone who knows anything about Asperger’s knows, this can be an extremely big problem for an Aspie. Any type of alarm or loud, unexpected noise can cause great distress. This has been something my daughter has struggled with as long as I can remember. In fact, her fear and reaction to alarms should have been my first clue that something wasn’t quite right. But I just thought “hey, what child isn’t frightened by alarms?”
I remember her as a toddler running with sheer terror on her face as I, much too often, accidentally set off the burglar alarm at our home in Georgia. Her running through the house and collapsing in her grandmother’s lap after I, once again and absent-mindedly, opened the back door in the morning without first disarming that darn thing. And what was my reaction? I laughed. Not in a cruel way, of course, but I had to sort of chuckle at her overreaction. Early on we all dubbed her the “drama queen” in the family. I would comfort her and tell her everything was fine and mommy made a mistake. Looking back now I kick myself for reacting that way. Knowing the anxiety it caused her now that she can use her words. Thinking of all the times since, before and after her diagnosis, learning that loud sounds can be so traumatic for Aspies… Her fixation on where fire alarms are located in every single store we enter. Me visiting her at school and her pointing out every single fire alarm on the wall. Oh, and I can’t forget the last place we rented in Ohio… there was a smoke detector in every room. Watching her as she stood directly underneath it with her head all the way back, staring at it, whispering gently to it as if she were facing a grizzly bear in the forest, trying to make friends with it so it wouldn’t attack her. Even the look of panic on her face when the dryer would beep to let me know the clothes were ready. No matter how many times I explained to her that smoke detectors and fire alarms are here to help us, it never registered. All she worried about was that at any moment one would go off and send her into a frenzy.
All of that takes me back to those chubby, red cheeks streaked with tears falling from her big blue eyes that held only terror and confusion. And I feel so much regret for not hugging her a little tighter and a little longer.
With all the anxiety and commotion caused by the emergency drills in Kindergarten, and her being evaluated and given the diagnosis of Asperger’s Syndrome that summer, I knew well enough to make sure accommodations were made for fire drills during her 1st grade year. She certainly needed to know the routine in case of a real emergency, but everyone worked together to make sure there was as little stress for her as possible. They would alert her the morning of the fire drill so she would be expecting it, but then that caused her to fixate on the looming alarm all day until it finally went off. A little counterproductive as she certainly wasn’t going to concentrate on her assignments. So after a little tweaking they came up with a system of letting her know just a few minutes beforehand and an aide would stay with her every step of the way. She would still talk about the fire drill for days and still fixate on the smoke detectors at home and even had frequent nightmares about smoke detectors and fire alarms going off. The nightmares are what really broke my heart. She was so pitiful in the middle of the night, crying because of a sound that she imagined in her sleep. How can you fight that?
I also have to wonder back to the nights when she was 2 and 3, the same years of all my false alarms, when she would have what I almost describe as night terrors. She would wake up screaming in the middle of the night, I would go in and try to comfort her but she was absolutely inconsolable. She couldn’t verbalize what was going on because she was so hysterical. She would reach for me to hold her but then push me away once I did. That would happen a dozen times before she would finally, out of exhaustion, fall back to sleep. I have to wonder if she was having nightmares then about alarms. I can’t think of anything else she’s had such a fear of in her life.
During the IEP meeting over the summer with her new school I made sure the principle was aware of my daughter’s alarm “alarm” and she assured me they would stay with her and watch her closely for any signs of distress. Weeks later after finding out class assignments I also sent an email to the teacher to alert her. And sure enough, I picked Bailey up from school the other day and she told me they had their first fire drill. She proceeded to inform me that although the alarm was very loud, louder than at her last school, she was very brave. I told her how proud I was of her. I also got an email from the teacher stating that even though she was quite anxious, she handled herself very well. I started to think that maybe she’s becoming a little less sensitive to the unexpected sounds and alarms, and maybe that is something we can mark “conquered” on her sensory dysfunction list.
But at 2:30 a.m. the following morning, as I was woken up by cries of panic, I went into her room to find out she heard alarms in her sleep. I felt like that grizzly bear had knocked me down and was pawing at me.
So maybe I can’t mark it “conquered” just yet, but she has come a long way from running through the house screaming in terror. But it breaks my heart that her anxiety over something that most people see as such a little thing causes her to have nightmares, especially since I can’t fight off nightmares. It’s also so frustrating that I have to, once again, wait many months to get her the services she so desperately needs to help her with her anxiety issues and help her function in our world. I try to read as much as I can to help her in the meantime, but none of the books that I’ve read include a section on “dealing with sensory nightmares” in the sensory processing disorder chapter.
So until I find that treasure box of weapons to fight off the grizzly bear when he’s after her in her sleep, I will simply have to go into her room, climb in her bed, and hug her a little tighter and a lot longer.