On Acceptance

This week, I (Cristina) had to remove a splinter from Ellis’ toe. If you have never removed a splinter from a toddler, I believe most parents would describe it as hellishly difficult. For me, it was nothing short of traumatic. It was one of the many moments that I allowed my mom mind to spiral around his autism

Does he understand why I am doing this?

Is he trying to say no? And if I continue, what is he learning about when he says no?

I took a break. I gave him his juice and his ipad while I gathered myself for round two. By this time, what I saw as a very large, partially exposed and thus should have been easy to remove splinter had broken several times and was bleeding.If only I could say, and know he would understand

“Just try to sit still for one minute.”

“It’s almost over”

“I’m sorry”

“I know it hurts. I love you. You’re so brave.”

I said ALL those things, because there are many many times I know he does understand me. But it did not stop his fight response or his screaming and clawing at my hands. Marc was away for work. It was 7:40 AM. We needed to be out the door for therapy by 8:00. If he were going to daycare, I wouldn’t care if he were late; I would take my time, try as many times as needed. But for his therapy center, he has a schedule and we get charged a late fee (in retrospect, this shouldn’t have mattered but by now I was sweating and in my own state of panic). So I restrained him. I won’t go into the details of that because, days later, I can’t without tears. I will admit we took another break but only after I caught myself screaming in frustration, a moment I am really not proud of. A lot of us have had to hold our toddler down for one reason or another, but my mind went through

Is he scared?

Am I hurting him?

One day, will someone else do this to him?

They are still trying to stop this from happening to Autistic kids in school.

The police might do this to him.

He doesn’t understand me telling him to stop fighting.

I am one of them now.

I am his mother, how can I be doing this to him?

What will happen to my beautiful Black Autistic boy if he is in trouble one day.

Will he be able to call for help? Will he be able to call for me?

We got through it. Dad facetimed and gave encouragement to us both. We played a game with the bandaids. He enjoyed sticking them on his head like many other kids do. We laughed. I gave him lots of kisses. And Ellis…. was fine. We got to school on time, and he went in happily like he does every day.

I got home and collapsed in my bed. I considered canceling all my meetings for the day and staying in bed. I cried. At some point lying there (not sure how long), I looked at the picture I took to send to Marc of Ellis with his bandaids. He. Was. Fine. It was ME. I was the one having a meltdown. He recovered. I was the one with shaky post adrenaline legs getting back in the car after drop off. Sometimes, it is easy to get caught up in all that is difficult about navigating your child’s autism. But one of the greatest joys is the intensity and purity of each moment. Ellis lives in the present in ways so many of us struggle to do. Ellis teaches me every day the joy of not taking anything for granted. Whether it is a skill he is working on, his laughter, a wave hello at pick up, or the way he can curl up with a book, everything he does brings pure joy.

I’m thinking about this a lot this month, Autism Acceptance Month. I want to advocate for my child’s needs and I want to educate those around me about what our life with Autism looks like so that they can make the changes needed for Ellis to live his fullest life as himself in this world. In doing that, I spend a lot of time talking about challenges. But there is so much joy also. I consider myself pretty educated as a person and particularly as an educator; I have learned more about learning in these almost two years since Ellis’ diagnosis than I have in my 17 years as an educator. We laugh every day, big bombastic joyful laughter. Every single day, I am so proud of Ellis. He works harder than any kid I know and he laughs and runs and jumps and I swear if we could bottle his glee we could probably create world peace. My goal for this coming year is to always come back to this joy. Yes, there are hard parts, but the joy is so much more powerful AND it is what I want the world to see in my child as he finds his place. Yes, I want the world to understand his needs and accommodate them, but only in service of knowing how incredibly amazing he is as a person and for him to continue to feel the joy he carries now. In the same week as what I will now call “The Splinter Spiral” Ellis and I glazed a cake. It was a big deal because he has been working on loading a spoon and pouring its contents with his Occupational Therapist - the very skill I was stuck on mid-pandemic when I realized something was different about Ellis. The whole time, he was singing one of his new melodies - another thing about him that amazes anyone who takes the time to listen to him singing. For me, as his mom, Autism Acceptance is not just accepting his challenges. It is accepting his whole person, including and beyond those challenges. It is creating the conditions in which he can be his fullest self. It is all of us remembering how much we can learn from each other all the time, and that we are better off when all of us are able to thrive.

I (Dad) like that we’ve gone from Awareness to Acceptance or at the very least combined the two. I’m peripherally aware of many things. It doesn’t mean I accept or even like them. I tolerate them. I’ve been watching my little guy closely and he’s developed (probably from me) a bit of a scowl. It appears randomly and is not necessarily a sign of distress or frustration. It is, I believe, an imitation. Ellis is a boy comprised mostly of smiles, beautiful laughter and song. Much of this I get to be a part of, but in certain moments perhaps politically or financially charged he sees his father scowl. That old adage about it taking more muscles to frown than smile is pressed into service here. He is sensory seeking and so I think he simply enjoys the momentary tightening of muscles in his face, but the scowl inevitably after seconds, melts away. Seconds later, that smile.

His default setting is joy. I watch this with an intensity that may often lead to a scowl. Cristina often reminds me to fix my face as it may be reading much more hostility than I intend. The other side of this is when he is in pain. There is an agony that pierces me so viscerally it is hard to put into words. I want to fix it immediately. I want to quash whatever caused it so he doesn’t need to feel that pain a second time.

What these degrees of emotion are teaching me is acceptance. He can’t live in bliss. He’ll need to experience some measure of pain as inevitably we all do by design. It doesn’t make my wife nor I negligent or hyper protective to want to shield him from the pain, however, it does make us unrealistic that he won’t face some.

The world is regressing in many areas as we break into further tribes with potential for conflict in each. But I must accept that my little boy is growing stronger, wiser and hopefully kinder each day. He is so intentional with his affection that it is unmistakable when he shows love.

As of late I’ve come to realize that I’d do well to take a few pages out of his book.

Although bedtime remains 8:30 PM sharp! And I will die on that hill.