Becoming a Special Needs Parent Was Unexpected—But So is My Strength As a Mother

I never wanted to be here.

Carting my child from one therapy appointment to another. Arguing with the insurance company about which prescriptions should be covered, or even which ones my doctor is allowed to prescribe.

Receiving phone calls from my child’s school questioning decisions I’ve made about his therapy schedule.

I never wanted to be here.

Listening to my child say he hates himself and that he’s stupid. Watching him roll around on the ground crying about how hard homework is.

I never wanted to yell at my child to finish his homework.

I never wanted my child to scream at me. Hit me. Kick me. Throw things at me.

I never wanted to choose between leaving the room or letting him hit me.

I never wanted to scream so loud I lost my voice.

I never wanted to hold my husband’s hand while we both cry, exhausted and baffled.

I never wanted to sit through hours of special education meetings, only to be told my child doesn’t need what we’re asking for—what we know he needs.

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To be told I’m wrong about my child’s diagnosis. That he has no problems. That it must be something we’re doing at home. That it’s my fault.

I never wanted to fill out thousands of questions on survey after survey, at agencies and offices, only to be given the same information I already know and offered no guidance.

To decide with every new meeting, friend, coach, and teacher whether to disclose a diagnosis. Will it help my child? Or will it hurt?

Over and over. Every day.

I never wanted to stay awake at night wondering if he’ll ever live on his own. Or get married. Or have children.

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I never wanted to question every decision I make.

To have my child question every decision I make.

To have others question every decision I make.

I never wanted to be here.

And yet.

Here I am.

Here I am learning to ask the right questions. To find the right resources. To seek out the right person.

Here I am speaking up for my child and myself. Even though it’s uncomfortable. Even though I’d rather curl in a ball and pretend none of this is happening.

Here I am making the phone calls I dread. Not putting them off. Doing it because my son needs me to.

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Here I am standing in the gap for him. Standing between him and the world as an interpreter, an advocate, a champion. Hoping one day to move out of the gap and stand beside him as his friend.

Here I am teaching him to stand up for himself.

Teaching him to understand his struggles and work through them. Teaching him to recognize and celebrate his achievements.

Here I am growing stronger and more courageous every time I choose to speak up for him or reach out for help. Being an example so he can grow stronger and more courageous along with me.

Here I am feeling crushed under the weight of all of this responsibility but still standing. Still pushing forward.

Here I am watching him succeed. Watching him get his first hit in baseball. Watching him run down the street to play with his friends. Hearing him use his voice to say what he needs and ask for help. Sitting beside him as he advocates for himself in a meeting at school.

Here I am holding my husband’s hand as we both cry, humbled and amazed. Baffled and exhausted. And proud.

I never thought I would be a special needs parent.

I never wanted to be here.

And yet.

Here I am.