Diagnosis Grief

Dear new Autism Mama and Dad,

This isn’t what you expected or planned. You’re not sure what happens next. I just want you to know, 5 years on since Peter received his diagnosis, that it can be wonderful. Don’t get me wrong- It’s going to be a little (or a lot) extra. It’s going to be a little (or a lot) lonelier. It’s going to be different than you imagined- but it was always going to be different than you imagined. They are never who we think they’re going to be, and that applies to allll the kids, not just ours with diagnoses. 

I went through grief, and I cycled through it a few separate times. My conviction that Peter is who he is supposed to be, that he is exactly how he should be, and that includes autism, became stronger than bargaining or denial. So now my job is simply give him the tools to deal with the world on his terms, and help spread the word to the world that different is not less, and we need different, in fact. 

Listen, give yourself grace and time. Cry now, because it sucks. But also know that it won’t always, and that in many ways there’s a whole other world you get to be a part of now. Sometimes I don’t like that world very much, because it demands more from me and has forced growth in me in ways I resisted. Often. It for damn sure makes me a way better person, and that’s daily. I’ve had to get really comfortable with not knowing the future, or if I’m necessarily doing the right thing all the time. Saying that out loud helps. Telling Peter we are doing our best with the information we have, now that he’s old enough to somewhat comprehend what we mean, helps, too. He knows we love him exactly the way he is, and THAT is winning.  

Usually, its wonderful. Peter’s point of view and manner of being is so unique and cool. I’m proud of that. I’m proud of him, incredibly so. He’s made huge strides in development that hasn’t come easy to him, but he’s also been ‘developing’ us at the same time. I’m not the same person today that I would’ve been without autism. I’m deeply pleased about that.  

 Cry your tears. Shake your fist a bit. Its perfectly normal, and probably necessary. Then you’ll wake up one morning and realize you’re not missing a child you ‘should’ve’ had. You’re blessed with the miracle of the actual. 

Love, 

Sarah