Permission to Grieve

What I want the world to know about being a mom of a child with autism is that it is coupled with grief.

I love my daughter. With every ounce of my being. She brings me joy and hope every single day. She teaches me patience, perspective, and that there is more than one way to do EVERYTHING.

But I was not unprepared for the grief.

When you hear that you are going to have a baby your brain starts dreaming of the life that will soon be. So many aspirations race through your mind including fantasizing about the milestones your child will accomplish.

Small milestones at first: the first crawl, the first step, the first word. Then the bigger ones: the first A+, the first sleepover, driving a car, the first job, graduation, and marriage.

I can remember the very moment all of my speculation about Lexi having autism were confirmed. It wasn’t at the doctor’s office during her diagnosis. It was before that.

It was when her daycare returned the checklist they filled out for the neurodevelopmental pediatrician. She was marked “deficient for age” for,  Every. Single. Question.

I cried. Ugly. The whole way home.

As I cried I went through a series of thoughts. All the things she will miss out on, all of the things she won’t be able to do, all the things she won’t have the privilege to do, the impact it would have on our family, the hardship.

In that moment I mourned for the life that “should have” been.

I cried. Ugly. The whole way home.

I sat in this place. This place of morning and grief, for a while.

Then, as I was reading a book called Forever Boy, by a fellow autism mom, Kate Swenson, Finding Cooper’s Voice, I found a piece of validation I didn’t know I needed. I read her words,

“This is hard stuff, but don’t run from it. Don’t avoid it or ignore it. Feel it. That is when the healing happens. And then pick yourself up and keep fighting.”

I needed to read this.

I needed to hear that my mourning and grief was natural and healthy. I have never had feelings like this that didn’t revolve around death and honestly it was a little confusing. 

I am now past the morning.

I often think I am through the grief.

In the autism world we say “celebrate the little moments, for they are big.” I agree with this.

But, if I am being 100% honest with you, I grieve the big moments. The little moments ARE big and SHOULD be celebrated. But celebrations over the seemingly little accomplishments doesn’t mean that I don’t get sad when I see children who are younger than Lexi, breezing by her in milestones. And it doesn’t replace my desire to celebrate and rejoice in the big moments.

Every now and again I get sad that our victories are different from that of typically developing children. 

So what I want the world to know about being a mom of a child with autism is that you are not alone. It is okay to mourn. It is okay to grieve. But, when you’re done and when you’re ready, “pick yourself back up and keep fighting.”