Grief is usually a word associated with death.
A deep pain and sorrow that stabs at the heart.
I think that’s why a lot of people take issue with parents of autistic, or other special needs children, saying they had to grieve when they found out. How can you grieve for your living child? To be honest it does sound awful. Even worse being that child and hearing your parents had to grieve over you. I understand.
The truth is my son, Johnny, is five years and was recently diagnosed with Autism Spectrum Disorder and a speech impairment, and I grieved hard when I found out. Some days I still do.
The thing is I don’t grieve over Johnny, I grieve over the expectations I had.
If you think about it, many parents do that. When their child doesn’t like the sports they loved growing up, or when they drop out of school, or decided not to get married or have children. I certainly did not follow the path my parents wanted me to take and that hurt them at times.
A lot of parents, whether they realize it or not, put so many expectations on their children the moment they enter the world. Then when the child doesn’t go along with it, some grieve what they thought should have been.
With autism the moment it’s brought up by the doctor, or when you get the diagnosis, it all comes crashing in at once.
The dreams crash.
The wishes disappear.
The hope dies.
Everyday small expectations come crashing down.
The day autism was first brought up at Johnny’s two year appointment I was in full denial. I thought it was just a speech delay, he was just shy, I thought “he’ll grow out of it”.
I was mad at the pediatrician for spending the whole appointment on that one topic. I wanted to talk about his sleep issues. Which in hindsight is hilarious. Many ASD children have sleep issues.
With most autistic children diagnosis isn’t at birth and certainly not during pregnancy. You don’t usually find out and until a few years into their life. For us until then the plans in our head continue to be made, because it was all going to be fine.
I thought I knew who my child was and then suddenly someone told me I didn’t at all.
That I was wrong all that time.
The grief began and I started to realize that at that time:
My child never talked to me.
We couldn’t do the sports everyone was starting.
No easy family outings to the store were possible.
He had no interest and they weren’t coming.
Everything was forced and hard.
I watched how everyone got to live their dream. I was confused by why mine wasn’t coming. Why my child seemed to be suffering through life.
From the beginning it was clear that Johnny was different, but sometimes that difference was small, other times it was huge.
When four finally came and I was sure and we officially sought diagnosis. Many tears were shed.
It was official:
Johnny would never live a typical life.
His journey would be hard.
He might not ever drive.
He’d have to defy statistics to get married.
He very likely won’t have kids.
That’s a lot at four. The day we got the diagnosis I cried and mourned a life my family would never have. The safe walls of the life I was building in my head were bulldozed all at once.
Now I think I’m entering acceptance.
We have new dreams, wishes, and hopes.
But the sadness still comes in waves. When I see friends with their kids in regular school.
When I see kids starting piano lessons, playing sports, or riding bikes I get sad. Kids having full conversations with friends and family pricks at my heart. Even watching my daughter pick up on things, and learn, from just watching us and others is hard some days.
The thing is now Johnny notices those things too. Sometimes he wants those things, but doesn’t know how to get them. That’s the worst part.
The hard days are always hard, but even on the amazing days sometimes I get sad it’s not enough.
None of that is Johnny’s fault the kid is freaking amazing. He works so hard. He’s coming so far and has already defined some many odds. The pride I have in that kid makes me want to burst.
To many people reading this who have typical kids or no kids. You probably think I’m crazy. You don’t think you’d mourn. I would have probably said the same, but here I am and it’s awful and feels wrong.
When I was pregnant I never made a list of the things I wanted my kid to do or who I wanted him to be. Some things you think will just happen. You assume your child will talk, your child will look at you, your child will have interest in something, your child will be teachable.
We have those things now, but they didn’t come easy and they still don’t look typical. We fight for them all the time.
Yes I grieved what I thought was going to be, a life that won’t come, sometimes I still do, and that makes me feel guilty, but I am so grateful for my son. Johnny has changed me and my life. I’m sad his life is hard and many times uncomfortable. I’m sad our road is hard, but I am always working at finding the light and making his life better.