It’s been a while since my fingers have tapped away at the keyboard. I’ve had posts swirling through my mind, but unless you have an amazing gift of telepathy you haven’t been able to access those posts. In short, I’ve been AWOL.
I’m confident that my regular readers will get it and be compassionate. You understand that when you have a fringy kid, sometimes you just go Absent WithOut Leave. Unfortunately, fringy AWOL doesn’t look quite the same as the military version. In the military version, AWOL means the individual wasn’t given permission to leave. In the fringy version, AWOL means we are absent from life, but we are most definitely not experiencing any type of Leave per se. We go AWOL because the fringiness takes over and life turns into a daily battle for survival with no space for anything else. Yes, we are absent from our typical family functions, friendships, basic tasks of living, but we are most definitely WITHOUT Leave. Though, if you’re anything like me, you fantasize leaving every day.
KBear, my brilliant, witty, often thoughtful daughter with autism, dyspraxia, sensory issues, epilepsy, and anxiety has been having a REALLY difficult time transitioning into summer this year. And when KBear has a hard time, the whole family has a hard time. It requires going AWOL.
Again, I’m guessing that most of you get it and have been there. And I’m guessing you’ve had family and friends not get it when you’ve had to go AWOL. This post is one to share with those people who simply just don’t get it.
Here’s the first bit all of you without fringy kids (differently wired) need to understand. You need to understand what we fringy parents mean when we say “our child is having a rough time” or “it’s been a hard day.” We mean any and all of the following and more:
· Our child has kicked us
· Our child has hit us
· Our child has screamed hurtful words
· Our child has screamed foul language
· Our child has writhed around on the ground/bed/stairs in uncontrollable distress
· Our child has attacked their sibling
· Our child has refused even the simplest of requests
· Our child has needed continual reminders to do the basic routine tasks of the day
· Our child has engaged in self-harm
· Our child has tried choking herself
· Our child has hit their head so hard that it’s bruised the next day
· Our child has lost all words to communicate what they need
· Our child has looked us straight in the eye pleading for us to help and we have compassionately gazed back with no help to offer
· Our other children have had less of us because we’ve been putting out fringy fires
· We’ve had no breaks
· We’ve had to use all our energy to keep ourselves emotionally regulated
· We’re human and we’ve yelled or said hurtful things or worse
· We’re overwhelmed with shame and guilt over the times we’ve lost it
· We feel alone
· We have panic attacks at the thought of a whole summer of this
· Our bodies are in a constant state of high alert in preparation for the next battle, which will be in 5 minutes
· Our homes have been damaged, our possessions have been broken
· We’ve comforted the child after the meltdown
· We’ve comforted the child’s siblings after the meltdown
· We’ve used the rare minutes of calm to furiously try to get on top of the daily needs of house and yard care
· We’ve used the rare minutes of calm to try to anticipate what the next trigger could be and creatively plan ways to avoid it
· We’ve barely made it through each day
And so yes, we’ve gone AWOL.
Here’s what you, as a support person, can do.
First – Notice. Be mindful when your friend or son or neighbor hasn’t reached out to you or been present in the ways they typically are. Notice when they are absent.
Second – Understand. Understand that the whole family is affected. Understand what it means when they say “it’s been rough.” Understand that when it’s rough, it’s often relentless. It isn’t the 15 minute stomping off to their room. It’s often a day-in-day-out attempt to manage the emotions and behaviors. Understand that they barely have the energy to make it through the day, let alone the extra energy to reach out to you.
Third – Talk. Talk to the fringy family you know. Let them know that you’ve noticed and understand their absence from life. Tell them that you care. Tell them that they aren’t alone. Tell them that there’s hope and that they are seen. If you’re not a talker, send them a written note. It’s amazing what a little acknowledgement and validation can do.
Fourth – Help. Do something. Without being asked, just help. When it’s rough, it’s hard to even know what to ask for, so don’t expect them to ask. You just act. Mow their lawn. Weed their garden. Cook a meal and bring it over. Drop off a gift card to a local take out place (make sure they can order it out, because going to a restaurant is probably impossible at these times). Give them a case of beer or a couple bottles of wine. Tell them to send you their grocery list and go to the store for them, or just bring over some extra basics. Ask to take their other kids out for the day, or if you know what the fringy kiddo needs, ask to take them out for the day.
Fifth – Be Patient. Be patient as you listen to them vent as long as they need to. Be patient when it takes months before their family is regulated enough to rejoin the world. Be patient when they have to cancel plans at the last minute or don’t make plans in the first place. Be patient when they have to leave early or when it takes an extra 15 minutes to prepare for the transition before they can leave. Be patient when their children act differently than you think they should.
Notice. Understand. Talk. Help. Be Patient.
And your job, fringy mom or dad, is to do all those same things for yourself. Notice when you need to go AWOL. Understand that it’s okay to go AWOL. Talk about how difficult it is to be without leave. Help yourself and your child by asking and accepting help. Be patient when things go awry, when life doesn’t look the way you thought it would, when you’re so tired and your child is so wired.
And know that you aren’t alone. Even when we here at the Fringy Bit are AWOL, we’re still here. Even when other fringy families are AWOL, they are still there. We see you. We understand. We’ll all make it.