Advice for Parenting a Child with Special Needs

Kate Swenson is the owner of the blog, "Finding Cooper's Voice." In this very personal essay, Kate shares the advice that she wants every parent of a special needs child to know. 

Special needs parenting changes us entirely. There is no denying that. Because the truth is — the first few years are going to pull you so far away from who you used to be that you won't even recognize yourself anymore. 

You'll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you've aged a hundred years. Or maybe you’ll be standing in a crowded room, feeling entirely isolated and alone, and you’ll wonder if you are invisible. 

You'll wonder how your world can be so different. How you can relate anymore. 

It will challenge everything you know. You will question yourself. Your purpose. Your strength. You will wonder why. And how. Why my child? Why not theirs?

It will challenge your marriage. Your health. The way you parent your other children. Even your decision to have more babies. Your career and finances. Relationships. And not just with people. With God too (if you are a person of faith). 

You'll wonder how your world can be so different. 

You will experience the greatest love on this earth, and simultaneously wonder how it can be so hard all the time. You'll get shamed for being sad. And for missing the “almosts” and the “should be's.” 

You'll see the unbelievable beauty that this world holds too. Almost like you've been granted access to a special club — one full of forever hugs, This Little Piggy, Santa and smiles. You'll celebrate milestones long after you should, and it will be amazing no matter when it happens.

You’ll also see unbelievable cruelty. And it will take your breath away the first time it happens to you. To your child. You think you'll be prepared. That you'll come back with some witty, snappy comment. Only, you probably won't. You will try and shield them from evil. And then you’ll spend the next few sleepless nights wondering how you can live forever and change the world at the same time. 

At first, you'll feel like it's a race against time. Against their diagnosis. You'll do everything you possibly can. Your hope will be challenged. Then you'll find acceptance and realistic hope. Then you'll want time to stop. You'll want to keep their bodies small. Because the world is kinder to children. 

You’ll have days where you swear you can’t do it anymore. Where you are certain it will never get any easier. That it’s going to be this challenging forever. You’ll almost be unable to picture a world where you stand still. Where you don’t have to fight for basic rights, inclusion and easy. 

You will have the most unbelievable moments. Moments that make everything worthwhile.

And then you will have the most unbelievable moments. Moments that make everything worthwhile. Your child will shatter a goal, a milestone, something they have worked on for years. And you will know it’s going to be OK — because you believe in this tiny human and you know that they are worthy and capable and amazing. 

You will live and breathe hope and acceptance and kindness. And you will be sewn together with strength and determination. 

Yes, special needs parenting changes everything. It turns you inside out and upside down. But here is the secret that you must learn on your own. It also puts you back together as the person you were meant to be. 

That's the part that makes us lucky.