Severe.

That’s the word that was used to describe my monkey for the first time by his pediatrician.

Severe.

I think we have known for some time that my son was on the severe side of the spectrum. I just think we tried to not face it. I remember a few years back when my daughter asked me if he was severe or mild, I told her it was too early to tell. I think it was a mixture if denial and hope, all bundled into unknown.

And fear.

A few months ago when I was invited to talk to the grad OT students about autism, I remember I used the word severe to describe my son. I felt it was appropriate since the other moms had kids that spoke, that had friends, that had “typical” qualities. But I didn’t think about it much after. Or maybe I simply didn’t want to.

I received a letter from the school nurse last week. She wanted us to take the monkey to see his doctor, to get his ears and eyes checked. I called her to get more info. I wanted to know what exactly was she looking for since my son won’t be able to tell anyone if he can hear from one ear or not. He won’t be able to tell me if he can see from one eye or not. I was curious where this request came from. She said she understood my concerns; she simply needed a form stating that he had been examined. It felt like she only needed to check this off her to do list.

I scheduled the appointment for today. My husband, being a teacher, has Veterans Day off. I wasn’t able to go. But afterwards, he called me and said there’s something weird that happened. He said the pediatrician wanted to refer the monkey to an ear specialist. He was concerned that we may not get in quick enough due to a long waiting list. Then he told my husband, “I will reach out to see if we can bump you on the list. I will advise him that your son is severe.”

As I’m in my office, multitasking by working while speaking to my husband, i abruptly stop everything. All I can hear is an explosion inside of me. My heart exploded. The word was so rough to hear.

Our doctor made this real.

How does one hide from this now?

And yet all I can think about, all I want to do, is to scream at the top of my lungs to tell him how great my son did today. How he understood that he had to get on top of the scale to get his weight, and he stood still enough to get his height, and didn’t flinch as much that his temperature was taken too.

And these are so amazing victories for us!

And yet, the world sees severity. With not a glimpse of who he is, nor the milestones he’s overcome. Not a care of who the real him is.

And I know this is the beginning of our journey. And I know that the world will stop seeing my son and only see his disability as he gets older. And how I wish I could change this. Yes I have no control.

This weekend my husband and I were watching a movie, where death and a funeral came up. I mentioned to my husband that if I died, I don’t think my monkey would understand, much less understand the concept of the funeral service. My husband then said that we should talk about this. And we came up with a plan. If/when one of us passes away, we will let our monkey be present before everyone else shows up. Just the family and him. Then, when the services start, and people start come in, someone will take him home. Where he can feel safe and happy.

I know this is autism. And we have to take this one step at a time. We have to live day by day, hoping for better. But yet, the balance of being realistic with the mixture of hope is sometimes to much to process.

Yesterday, my son was playing outside, with his doggies, jumping on the trampoline. Two of his socks were on the floor outside. (Don’t ask me why…😂) And as he is playing with his pups, I go outside and tell him, pick those socks from the floor and put them in the hamper! You know better than this.

In all honesty, I was not expecting much to happen.

But he stopped jumping. Climbed of the trampoline. Came to pick up his socks. And went to the hamper to place them inside.

Then he stops in front of me, gives me a kiss. His ‘I’m sorry’ gesture. And climbs back into the trampoline.

Yes. My son is severe. But he’s so much more.