I had no idea what parents of special needs children experienced.
I was clueless. Probably insensitive and self-consumed. Until two years ago. When I found myself mama to three.
Many of you already know our story. I’ve shared bits and pieces online, here and on Facebook. It’s a long story, and a complicated one. The short of it? One day we were a family of five. The next, a family of eight.
Only it wasn’t that easy. Overnight, we launched into the world of Reactive Attachment Disorder (RAD), adoptive and foster families, kinship providers, and learning disabilities. A massive learning curve. I read multiple articles and books, shared countless conversations. Still, I felt overwhelmed and alone.
Then I found out I wasn’t. That the exhaustion and grief were part of the deal, and other parents were out there doing the same hard things, day after day.
For those of you who love children from hard places, this post is for you. I hope it makes you feel less alone. For those on the fringes, this is also for you. You asked, “How can I help?” Here’s my best attempt at an answer (P.S. Thank you for asking):
7 realities many parents of special needs kids need you to know (but won’t tell you):
- I’m not snubbing you. You know the messages I haven’t replied to, the appointment I missed, and the get-together that never happened? I’m not avoiding you. In fact, I need you now more than ever. But each day is an effort at survival. I’d love nothing more than to hang out and do life, to swap text messages and share cups of coffee. I need it. But I have zero margin. Forgive me. Don’t take it personal. And, please. Please. Don’t give up on me.
- I don’t always know how to ask for help. It’s tough to know what I need when juggling crises. Besides, my needs aren’t always of the casserole variety (although I’d take one of those, too). I need regular weekends away with my husband to feel like a wife and a woman. I need a RAD-aware child care provider to watch my kids. I need to research the impact of diet on behavior and then develop an effective meal plan. I need a child therapist who accepts insurance, a full day to fill out stacks of legal paperwork, and an advocate to communicate to educators (both at church and school) the dynamics of families like ours. These are big needs, maybe impossible ones. I appreciate your heart, but I’m not likely to ask you to meet them.
- My kids aren’t like your kids. Yes, I realize all kids have “bad days.” I understand children lie, steal, and get too physical on the playground. But don’t assume that just because your son screamed in the grocery store that our kids are the same. We have meltdowns almost every day. I’ve been punched, scratched, kicked, spit on. I’ve listened to screams echo off the walls of my house for hours, simply because I asked a child to hang up a towel. I know you’re trying to empathize and normalize, and I appreciate your heart. But “all kids do that” invalidates my reality. I want to feel understood.
- I don’t need your parenting advice. Maybe I do, but save it for a different time, okay? I’m already reading every book, watching every video, and researching every conference and expert. No one wants to succeed at this more than I do. But I’m maxed out with advice. And although I respect you, I don’t need you to fix me. I need you to be with me. In spite of the effort, I don’t always see the progress. That means, more often than not, I feel like I’m failing. I’m doing the best I can. I need you to see me trying. And believe in me.
- “Support services” are more imaginary than real. I’ve discovered a great chasm between the discussion of support services and the provision of them. Yes, the county and state offer assistance. But navigating the system is like trying to find a diamond ring in the bottom of the ocean. I’ve spent hours on the phone and online with nothing to show for it. Most times, it doesn’t seem worth the effort. As for the church, I love her heart for the orphan. Love the fact that “social justice” is hip and current. But, can I be honest? We felt quite alone once we brought our orphans home. Let’s find a solution, together.
- Some days I want to run away. Please. Let me say it. Don’t try to fix my feelings or rebuke me with “Children are a gift from the Lord.” I know that. But some days I need to mourn what’s been lost. I watch other families, the ones who seem so “normal,” and can’t help but wish for an easy day. I’m optimistic about the future, yes. But I have no illusions that my efforts will fix all things broken. This is bigger than me. So some days I want to run away. I’ll get over it. But, for today, will you listen? Without judgment?
- I’d do it all over again. I know you’ve seen the tears and frustration. We’ve been positive, but we’ve also chosen to be authentic. In all the transparency, I realize you might’ve misunderstood. So hear this: I’D DO IT ALL OVER AGAIN. It’s the most difficult thing I’ve ever done, hands down. But it’s right and good and beautiful. And WORTH IT. Every day I’m reminded of my “why” in the faces of these children I love.
If you’re a parent of a special child, what would you add or change? You have a voice, and I’m listening.