The isolation of parenting neurodivergent children

“How’s it going?”

“We’re doing great! Hope you are too! See you soon!”

It was a blatant lie said with a smile that I was hoping would hide the truth. Everything is not great. My kid is struggling. His teachers are struggling. We are struggling and I am quickly running out of solutions.

My son was recently diagnosed with severe hyperactive ADHD (Attention Deficit Hyperactivity Disorder). He has been labeled the bad kid. The one who is crazy, who can’t control himself. We’re the bad parents who don’t discipline our children enough. But that couldn’t be further from the truth.

The Friday before Christmas, I picked my son up from school after yet another talk with the director. We were headed to a family Chanukah celebration and I felt anything but celebratory. When my husband arrived, I pulled him aside, holding back tears, and said, "I think we need to pull him out of school."

He is six months away from starting Kindergarten but I could not fathom another six months of this. I had been going to his school in the middle of the day for an hour, every day, so that he wouldn’t have to be forced to sit in a dark quiet room for naptime. Any parent of an ADHD kiddo knows that sitting quietly in the dark for that long just isn’t possible. So 2 hours out of every afternoon was spent helping him through that time so that he could engage in the classroom for the rest of the day. I was still getting pulled aside almost daily because of incidents involving my son.

The school was incredibly accommodating, patient, and doing their best to help us solve the problem. But being understaffed, limited by ratios (he had 23 kids in his pre-k class!) and the need to give teachers lunch breaks, I don’t think there was much else they could do. So I got called. Daily.

Making the decision to pull him out was beyond difficult. We were taking him away from his friends and halting his education with no notice. But he couldn’t be there anymore and I couldn’t handle the stress.

I have new stress now. The stress of what am I going to do with him every day? Can I get him into another school? What school would be the right setting? Will he be behind his peers when he starts Kindergarten? What if I can’t provide him with what he needs? What if I don’t have the patience for him? I still need to study, cook, clean, write, run the house, and worry about the other two kids.

On Christmas Eve, I spent large chunks of that day crying, overwhelmed, depressed, and questioning if I’d made the right decision. By 2 p.m., I just crawled into bed. I didn’t know how else to cope. Had we made the right decision?

I was upset, I needed to talk to someone, anyone but it was Christmas Eve and I didn’t want to ruin anyone’s holiday with my own struggles. So I cried and I slept. Depression is a beast.

I have since told a couple of friends what’s been going on and while they’ve assured me I could reach out regardless, I still don’t know that I would. Shouldn’t some things be sacred? And of my Jewish friends or my own family, they don’t (can’t? won’t?) understand the struggle of parenting neurodivergent children.

The Friday of our family Chanukah party, my brother could tell I was upset and asked what was going on. Before I could answer the question, it was shrugged off with “oh she’s just having a tough day.” But it’s not just a tough day. It’s a tough week, tough month, tough year.

It’s a life with two neurodivergent children who are trying to function in a world not built for them. I get all the mom guilt of watching my kids struggle, having my concerns brushed off as another bad day, or that it’s my fault because I expect too much of them and should just lower my expectations, lower my standards. But the people making these comments are not helping, just furthering my own feelings of isolation. They are ensuring that they are not, for me, a safe place to share my struggles.

This past Christmas Eve, with a house full of screaming children itching to get energy out while temperatures dropped to the single digits, was one of the loneliest days of my life. I’m betting most parents of neurodivergent children have felt the loneliness and judgment of having the bad kid.

I’m here to tell you that while there are moments when we feel alone, we most assuredly are not. We need to be more open about our struggles. Our kids are not bad. They are just being forced to function in a neurotypical world that doesn’t make space for them.

Shortly after my daughter was diagnosed last summer, I created a support group of moms whose lives in one way or another have been touched by ADHD. I am beyond grateful for this amazing group of women. We are open and honest about the struggles of parenting neurodivergence. Without them, I think I would feel completely alone.