It’s easy to forget that our lives are ongoing stories made up of parts — happy, sad, and bad parts. We especially forget about the big picture during the bad parts, when our minds often try to convince us that a challenging moment is and will be our whole story.
I was convinced of this during an intense crisis recently experienced by my autistic child, who also has ADHD. The crisis has since receded, but I still think back to those anxious, stress-filled days and sleepless nights before we could find solutions or respite. I remember the pervading sense of hopelessness as the countless strategies we acquired through years of therapy did nothing to help. And then there were feelings of guilt as one member of the family needed almost all of my care and support while the others faded into the background. My child was in a state of absolute distress, and so was the rest of the family.
Amid the two-month crisis, it felt as though this would be our life forever. That nothing would ever get better, and we would live in a continual vortex of stress and trauma. Fortunately, we had a support network that came together in ways both expected and unexpected. Family, friends, therapists, and school staff worked tirelessly through countless phone calls, emails, texts, consults, and face-to-face conversations until they had knit together a beautifully elaborate blanket to catch and support us.
The Complicated Aftermath
Eventually, we were able to measure meltdowns by minutes instead of hours. To count on only one hand how often they happened during the day. I watched as my child slowly started smiling and laughing more. Our family finally stopped living in an anxious haze and took a collective breath.
But I felt no relief or happiness in the following breaths. Instead, a heaviness settled on my chest, making each breath feel shallow. I felt shackled by what we had just endured, and I found myself scanning for signs that another major meltdown might be brewing.
In the aftermath of the crisis, I yearned for a neat and tidy ending — to put a bow on answers that would prevent another crisis from happening. To find closure and absolution from my complicated feelings. What I found was untidy, uncomfortable, and unavoidable. I struggled with the dissonance of holding the profoundly hard things and truly beautiful things in the same hand. Of enjoying the beauty of the mischievous glint that returned to my child’s eyes while acknowledging my own anxieties over the future.
Looking forward, I see that the future will be filled with happy and hard moments. That this time in the middle is part of it. I work to recognize and process the depth and weight of what we went through in a culture that prefers I either immediately get over it or be so compellingly triumphant that I can’t acknowledge the suffering. While I can’t control what happens, I can control how I think about it, carry it, and narrate it to my children. I can temper my pain, remembering the unmitigated anguish experienced by my child. I can heal myself and not carry the experience as a perpetual wound. I can explain all sides to my children to help them better understand what they went through and know they are loved and never a burden. In these ways, I can make the struggle and suffering matter.
*Author’s Note: Careful consideration and discussion was given to honor my child’s privacy and consent in writing this piece.
Autism in Children: Next Steps
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