Here’s the truth about being a special needs parent: it’s not a blessing.

You’re not going to catch me calling my daughter Emily “a gift.” Why? Because there are times when I’m full of frustration, anger, and fear, wishing my daughter was different than she is. Even bargaining (as if this was possible) for about 30 more IQ points for her.

I don’t hold with the “special kids come from special families” world view. Or the “if you want something done, ask a special needs mom” line of thinking. I’m not down with “it takes a special person to care for a special needs child.” OR the common ‘correction’ that a child with special needs will inspire you to be a special person.

I’ve got no patience with those who say stuff like, “Oh, kids with [XYZ], they’re always so sweet!” Or, “I bet he’s a genius at science, like that famous guy with [fill in the blank].” And do not get me started on “I don’t know how you do it!”

How do I do it? Like any halfway decent person thrust into a similar situation would do it: I just do.

Because what choice do I have? And just because I’m doing it doesn’t mean I love doing it, or am great at doing it. I’m just doing it. Just like you would. (See? Don’t get me started.)

But here’s another truth about being a special needs parent: my daughter changed my life for the better.

Raising a special needs child is not some kind of romantic ideal of parenting or mom-ing. Special needs moms are at risk of falling into a trap that awaits regular-needs moms as well: basing their self-worth on how selfless they have been that day.

As days turn into weeks and months and years, the toll might be terrible, ranging from exhaustion and rage to abandonment of personal hope for fun, freedom and peace.

The truth is, special needs parenting is just parenting. You have a responsibility toward this person in your family who you love with a crazy love.

But then there are all the times you can’t remember if you really do love them, or wish you didn’t have the responsibility. Special needs parenting is complicated, searing, exhausting, lonely, and hard (really, really hard).

Being so difficult is exactly why it can also be unexpectedly good. Sometimes, it’s good not in the way we typically define good, i.e. by outcome. As in, something is good if it gets results, brings success, reaps awards.  It is often good as in good for you, whether you like it or not.

As with any serious loss or challenge, this is an opportunity for personal growth.

If you take it. And if special needs moms don’t learn to give up our focus on RESULTS, we’ll drive ourselves insane.

Here’s another truth: Being a special needs parent can also be plain old good, good.

It might even be great. (And then again, it might not be.) Our family has many good/great moments that are traceable straight to Emily. So if you have that available to you, grab hold of it, and make the most of it. Enjoy all the good, for sure.

But no experience of being a special needs parent is all good. Of course. (Nor is it always all bad either.) Furthermore, everyone’s situation is unique to them.

My special needs kid is charming; yours may not be. Your special needs kid might be super smart; mine surely is not. My special needs kid has intellectual and physical disabilities, yours might be medically fragile, or have an “invisible disability.”

Or any combination of these, with any number of exciting extras piled on top. But the one thing for sure is that it won’t be exactly the same combination as the next kid over’s.

What is true across special needs families is that having a kid with special needs creates a crisis in a parent’s life.

This is not a job people want. OK, there are a few that seek it out. But for the overwhelming majority of parents with a special needs kid, this is not the path they started out on. Or the one they intended. And they are not thrilled to be here.

My work, now, is about what happens for people at any crisis point — and how it can be a doorway to something better.

That’s as true in my own life and family as it is in my practice. And the crisis, whatever its magnitude, most often has nothing to do with special needs. My message to special needs parents like me is the same as my message to any parent, or any person facing a crisis.

That message? It’s all about Heart. It’s all about leaving your brain-first life to steer (slowly, awkwardly, sometimes without hope) towards Heart.

Heart is where you’ll see what makes having a kid with special needs — or any other difficult part of life — worthwhile, even remarkable.

Heart is where you’ll find your power, competence, and capacity to do a life you never imagined you could.

For special needs parents, Heart is where you are when you connect with your special needs child. It’s where you are when you experience love more powerful than you could dream up.

Heart is where I landed and where I strive to return daily. Heart is the place from which I can say, I wouldn’t trade my life now with Emily, and all that entails, for any other life.

It took me a while to get there, and sometimes I have to make an effort to remember the way back. It’s knowing the power of Heart that is the blessing. And it’s all because of Emily that I learned to trust my heart.  (Take this short quiz to see how Heart strong you are.)

What is the truth you’ve learned from being a special needs parent? Let me know in the comment section below.

Heartfelt wishes,
Amy

Photo credit: Lorin Klaris