When I first started fighting to #LockTheClock six years ago, I knew that clock changing was annoying. I have come to learn that it’s also deadly, and we have lots of stats about that on the research page. Then came the day I went to testify in Nebraska, and the young man who testified before me made a statement that was so clear and powerful about how clock changing is hugely exacerbating for his seizure disorder. 
 
If a person dies or ends up in the ER, that’s bad. Also bad, but harder to quantify, is the disruption for families like the Fausett family from Nebraska, or the family that you’ll read about below.
 
The writer of this post came to my attention because she contacted her state legislator, and the staff for that legislator then contacted me. When I heard this story, I thought it would be much better to get the story on this blog first-hand, and boy I was right about that. (The photos are from the mom, art creations from her kids.) 
 
I hope you find it as moving and touching as I do, and I will keep this family — and all other families that deal with special issues like this — in mind as I fight to finally, once and for ever, put an end to the barbarism of clock changing.
 
— Scott

 
 

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Hi there. My name is Amy. My children both have the diagnosis of Autism Spectrum Disorder, in addition to many other special needs. Life is challenging, and we spend hours every week in therapy and with specialists trying to support my children with their disability. My children require routines and schedules to navigate the world. The routines help them to stay regulated and in control of their emotions and bodies. 

Daylight Saving Time (both when it starts in the spring and ends in the fall) is an incredibly challenging time for my family. The impact of arbitrarily changing the time twice a year is disruptive, dysregulating, and presents real safety concerns for my family. While others might find the practice of DST merely annoying or unimportant, to my family it is dangerous. 

Let me ask you to think back to the Monday after Daylight Saving Time began in March. How were you feeling that morning? Maybe a little tired because it felt like you lost an hour of sleep? Maybe you wondered why it still felt so dark when it was time for your morning commute? Maybe when you ran out for your coffee you were surprised by how different the quality of the light was? Maybe you were surprised that you didn’t feel as sleepy as you usually do when it was time to turn in?

My children were extremely dysregulated that morning. There were tears, there was screaming, there was aggression, both physical and verbal towards me. I think we can all agree that resetting the body’s sleep pattern is not as easy as resetting a clock. At my house, we try valiantly twice a year to ease the transition, but bodies have their own internal clock. My son could not articulate why he felt so sleepy and off that Monday. This caused my son real physical and emotional stress–the fallout of which is termed a meltdown. For the rest of the day, he was stressed out and felt as if the world was not quite right. For all of us there are little reminders throughout the days after DST begins or ends that we switched the clock—we forget to reset a digital clock on the oven, we aren’t as hungry for our meals, the shadows are a little shorter. For most of us this is no big deal. We know why everything is a little different, and we adjust to the differences pretty quickly. For my children, this is incredibly upsetting and stressful. Nothing feels right to them. They don’t understand why they had to wake up early. They don’t understand why it feels as if their therapists are an hour late in arriving, and they don’t understand the explanations of DST.  

For my children, adjusting to the new time takes three weeks to one month. Imagine missed naps, refusal to sleep at bedtime, and groggy mornings for a month! And that’s just their disrupted sleep pattern. 

 

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But my children don’t process the world the same way most of us do. The sensory input is far more overwhelming to them and can very easily dysregulate them—leading them to at times shut down and withdraw or at other times to meltdown and tantrum. We’ve all experienced days where little irritations can accumulate and build up until one last straw sets us off. This happens often with my children; however, they have more limited language and more limited social tools to understand how to deal with their emotion. So they meltdown. Aggression towards themselves, their peers, or an adult like me is often part of that meltdown. This is what I mean when I say that DST poses real safety risks to my family. It creates for weeks these situations where my children feel as if things are off, in addition to messing with their sleep, and rather than being able to talk and process this, it builds until there is a meltdown. My children have a hard enough time coping with everyday life, but because we want time to “spring forward” or “fall back” we have to make everything harder for them. Adjusting is hard when you have Autism. The meltdowns that my children experience are not choices. My kids are not naughty, spoiled, or bratty children who are tantruming to get their way. They are special kids, who see and experience the world differently and deserve our help.  

So let’s go back to that Monday in March. My son had a meltdown, but for the rest of the day his fight or flight instincts were activated. His stress level, already elevated, continued to build until a sensory stimulus (a car passing by too fast as we were out for a walk, a food that is the wrong shape or color, a smell that is too strong) pushed him over the edge. Then another meltdown happened.

Unfortunately, meltdowns can grow in their duration and severity. 

Have you ever had to physically restrain a child for their safety or your own? I have during my son’s meltdowns. Have you needed to be trained and certified in how to physically restrain a child in crisis? I have. And while aggression towards self or others is not always a hallmark of a meltdown (although it is certainly a hallmark of my son’s), it is very common. Also common is property destruction, elopement, verbal aggression, and vocal disruption. 

These are sobering experiences, and they motivate me and other parents like me to look for patterns and anticipate situations that could lead to meltdowns. Arbitrarily changing my children’s routines and throwing them off twice every year for DST leads to a whole lot of meltdowns which results in increased incidents of aggression. Daylight Saving Time isn’t worth it, y’all. But helping my children out and other children like them is worth it. I love my children. They are wonderful, intelligent, creative people who see the world in cool and unique ways. They are working hard to learn how to use language and calming strategies to stay regulated and stay in control of their emotions and bodies. We can help them and by locking the clocks and ending the practice of Daylight Saving Time. 

 

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My job as a parent of disabled kiddos is to advocate for their special needs. Before you dismiss the movement to #locktheclock as unimportant, consider how the practice is not only really challenging but dangerous for my family and other special needs families. 

By scodtt