You can ask any autism parent about what it’s like to raise a little person with a big diagnosis. You will get many answers about what it’s like. And that’s because there are no two autistic people that are the same. And on top of that, I think parents acknowledge and accept it in different ways.
For me autism is frustrating. And exhausting. And heartbreaking. And dreadfully hopeful. And painful. And above all a process. A slow process that crawls along with glimpses of the future. Autism is expensive. And SO unbelievably time consuming. Autism can take your time. It can suck up hours after hours of time.
There are so many parts that go into parenting a special needs baby. And it’s different for everyone.
But to be perfectly honest, for me, autism is mostly just lonely.
It’s quiet a lot too. I pick Cooper up from school and there are no conversations about his day. No desire to show me what he made that day or to tell me what he wants to do when we get home.
I’m mostly just sad because I don’t know this little boy. And I might never.
I am grieving for a child I’ve never known.
Cooper is 4. I grew him in my tummy. I thought I was going to die from the pain when he was born. And then I thought I was going to die from lack of sleep. And then from the stress of the unknown. But I survived. I made it through. I persevered.
As I write this Cooper is standing next to me watching a movie. I know every single inch of his body. He is blonde. And stalky. He still has a baby belly and chubby cheeks. When he moves and flaps his diaper makes that squishy sound that I love. I can physically see him. I can hold him and squeeze him. I can rub his back and kiss him. But that is pretty much it.
I kiss him a million times a day. But every kiss except for the ones in the morning are initiated by me. He comes to me only or a snack, milk or to change his movie. That is it. I am lonely for him.
And I am literally obsessed with him. In a way that I can’t even put into words.
The loneliness is slowly turning to grief. I am grieving for the son that I wanted. For the son that he could be. For the son that I spend my days missing.
I can’t get over it.
I can’t move on. I can’t. You can tell me to move on and accept it. To be thankful that he is standing in front of me living and breathing. Trust me. I am.
But I am also living every day with a broken heart.
I spend hours thinking about losing a child. What that would feel like. To have this child one second and then in an instant they are gone. And I think…but you knew them. You heard their voice.
I actually physically miss Cooper. I miss everything I don’t get to enjoy with him. The conversations. The activities. The special moments that I may never get. It’s not just talking. It’s communicating in general.
What is his favorite color? Or game? Does he wish he had friends?
I spend my days with Sawyer playing, coloring, building. You name it. We do it. I would give anything to share those moments with Cooper.
So, I guess I just want to say…cut me some slack. Autism is so unbelievably lonely. And I’m doing the best that I can.