HOCC: “My son has autism, but he is not autism.”

Humans of Calvert County, Sarah Merranko & Anita Santoyo

Prince Frederick, MD- We have two girls and a son in front of ‘my handsome little autism boy’. This being our fourth child, I knew something was there. I didn’t know what it was, I couldn’t put a finger on it. He was too laid back as a baby. Then other triggers came in such as walking late, not talking, not attending to his name, not giving great eye contact, the repetitive behaviors came into play.

I went to my pediatricians at nine months and I said, ‘What do we do?’ She said the earliest you can get him evaluated is at two. I ended up calling (Infants and Toddlers) six months before to try and jump the gun. They had a cancellation the next week and said, “Do you want the cancellation?” I said, “YES!” Everything got started with Infants and Toddlers when he was 18 months. The next thing is we went to Children’s Hospital to get evaluated. He got his actual autism diagnosis when he was 22 months. It was good and bad. I knew enough about my child to know something was off, but the words on the paper made it real.

My husband is all optimist, all the time. His view is that everything will always work out. He’s super proud of him and anything that gets done in the name of progress.

My son has autism, but he is not autism. It is just a piece of him. I think he is adorably handsome. He is very charming. He is laid back, he is suave. He’s done a couple of photo shoots in the autism space.

Autism is so person specific, that is what makes it hard to treat, makes is hard to identify because everybody’s brain is completely different. It’s snowflake different. I remember the first week of therapy, they first started showing him pictures, he blew wide open. These are WORDS! He blew through that program and learned it so quickly. He is non-verbal. 

You need to grieve the child you thought you had. If you do not grieve, that loss, of what you thought you gave birth to, you will never come to a place to accept the one you got. That’s the biggest thing. To actually accept them. You got to pay attention. Are you in a place of acceptance or tolerance? That is what I check against myself all the time. 

Do whatever you can as fast as you can. Get them evaluated. Find out as much information as you can and try to pull as many resources as you can. Figure out what the benefit (through health insurance) situation is. Find out what is covered. 

Autism is now a space that can be covered. Even if you are in denial or in a space of ‘I don’t know what to do next’, do something. Be okay with what you do. Every decision I made is the best decision I made with the information I had at that point in time. My parents and in-laws give me great moral support. They are there for my son; they are here for him and do whatever is needed.

I work full time and have a part time job. My husband works 0300 to 1100. It’s not optimal, but his schedule does help us out. It is a detriment to him and that’s why I don’t like it. I am rooted in faith. Everything I do around him is all hope, faith, belief in what you can’t see. There is no other way to put it.