We’re back here again, living in a deep valley that no one around us seems to understand. Both my daughter and my son have been in meltdown mode day in and day out for weeks. Life did that thing again that sends them over the edge: it changed. My daughter lost her favorite therapist to another job, therapy schedules shifted, and God asked us to leave the church we loved to join a team in planting a new church. I’ve felt fairly stressed about these changes but, what’s merely stressful to me, can be enough to cause my children’s worlds to come crashing down. So, here we are…in the valley again. A dark place that no one wants to talk or think about. Friends and family with typically developing children ask us how we’re doing and, unless they’ve proven themselves as someone we can be truly real with…we lie. We say we’re fine, because that’s easier than dealing with the awkward silence we get in response to the trials that make up our reality.
The best way for me to describe what the valley is like as a special needs mom is that it’s what I’d think drowning must feel like. I literally can’t breathe some days. It’s a heavy, isolating pressure. The consistency of my children’s desperate, screaming, violent meltdowns is enough to give me chest pains. It’s a sinking feeling; like a bad dream moving in slow motion, with no end in sight. It feels, at the center of it all, like torture. Even more, is the torture of knowing what it must feel like to my son and daughter. The terror in their eyes is the stuff of nightmares and leaves me feeling painfully helpless. Daily tasks such as brushing teeth or taking baths become struggles that can take hours to complete. Things that come with relative ease to most families, I spend much of my day trying to delicately orchestrate. I know, from experience, that we’ll come out of the valley at some point. We’ll spend some time in the sun and it will be glorious, because the valleys make us appreciate the sunshine more than we’d ever have without them. For now, though, even in the company of loved ones…I feel this lonely ache.
The nature of these dark times is such that, even if I wanted to try to explain what it’s like to those I interact with, I’m too exhausted. My body is struggling to cope with the stress. I can hardly stay awake lately, much less string words together into meaningful conversation. The very last of my energy is usually lent to holding back tears as those around me discuss their plans for summer vacation, or complain about their children doing things I am secretly wishing my kids were able to do. So, although I should probably be better at spreading awareness of what those in families affected by Autism go through…I’m just trying to survive it.
Where I’m going with all of this is that many people who have proven to be a safe place for us ask us how they can help, but I’ve always struggled with how to answer or what to ask for. I was overthinking it, until recently when I realized that I know of one simple thing that anyone and everyone can do to help when we’re in the valley…
Yesterday, after witnessing me work through a meltdown with my daughter, our lead ABA therapist spent some time using the experience to train in a newer therapist. What I overheard her sharing about our family left me quietly sobbing in the next room:
“What you just saw…that is what she goes through with the kids every day. This job may seem hard sometimes, but it’s easy compared to what they go through. We’ve got the easy job. This is daily life for them.”
It was everything. That simple statement of fact. It may seem meaningless to have someone comment on the fact that our lives are tough, but that’s sometimes the greatest thing that someone outside of our world can do to help: Acknowledge that this journey is what it is. It’s hard. It’s isolating. It’s a life-altering, joy-filled blessing…but it will break you.
There’s nothing more devastating than being broken AND alone.
Acknowledging the struggles of families affected by disability, even though you may not understand them, makes you the hand that reaches into the water; a life preserver to someone who may be very close to drowning. You don’t need to say “the right thing”. Most of the time, there is no “right thing” to say in the valley. There is simply the hope you offer by having the courage to say, “I see you.”