Nonverbal in the Face of Ignorance

Mar 2, 2018 | Parenting and Autism

nonverbal autism

 

We were already two minutes late to our appointment with the Housing Authority when we pulled in. It was shaping up to be a doozy of a Monday and it was barely 10 am.

Before the appointment, Levi had managed to sneak into the ‘impossible-to-open closet’ and found the Butt Paste. I had made the mistake of enjoying a cup of coffee for ten minutes on the patio before I started my day. He was COVERED from head-to-toe, not to mention the walls and floors he had painted. The only remedy is dish soap to get it out so after a 20-minute shower with many tears and screams, he was somewhat rid of it. Still, his hair made him look like a total 1950s greaser.

I panicked when I couldn’t print out any of my required paperwork for my appointment. After a little investigation, I found objects hidden in the printer that I know Levi put there.

So yeah, we were a couple minutes late to our appointment. When our caseworker brought us back into office she pointed out a corner of toys that Levi could play with. I politely declined, “Thank you, but I have to hold on to him or he’ll run”.

We sat a small desk facing the wall in the middle of the whole office. The caseworker sat next to us and started handing me the paperwork to sign.

Levi started having a rough time. He didn’t want to sit still. He started yelling and banging his head against the wall. I held him as tight as I could while I signed my name and date over and over again.

That’s when the ignorance started. A random office worker peaked her head around the corner and said, “You know there are toys back here that he can play with, right”? “I’m aware but I need to hold him or he’ll run”. I was rather short with this new woman. I didn’t even look her in the eye. I already felt embarrassed and I just wanted to get everything signed so I could leave.

Then, not a minute later, another woman peeks her head around the corner and says, “Wow! I heard all the screaming and I thought it was just a tiny baby back here. Wow. I didn’t expect to see such a big kid”.

I didn’t say a word to her or even turn around to see what her ignorant face looked like. My whole body turned hot. This was my first real experience of people being openly ignorant and judgmental of my son’s behavior and I froze. I hate that I froze!

It’s easy to be an autism advocate in front of a computer screen but it’s another to have to utter the words out loud, in public: my son is autistic and some situations are too much for him.

I’ve been lucky to avoid such ignorance because we don’t go out. We stay home 90% of the time, if not more. This is a truth that many families on the spectrum understand. It’s easier to stay home. Home is safe. There’s no judgment at home.

My first time with open ignorance about my son’s behavior left me feeling defeated. I took that woman’s ignorance and I let it settle inside of me instead of giving it back to her. Never again. I’m going to use her words as a strength to find my voice and to be the voice for my son. My son will find his voice only if I use mine first.

All children, autistic or not, deserve to live in a world of tolerance, acceptance, and love. Ignorance thrives when people stand idly by and do nothing. If you’re not part of the solution, you’re part of the problem.

 

When I got home I decided to write a letter to the board of directors. Here’s what I wrote:

Dear Mr. [redacted],

This letter is to inform you of our most recent experience with the Housing Authority of [redacted] County, which you oversee. You have some really great employees that I will name but some employees that maybe need some redirection.
I am a resident of [redacted] with my three-year-old son, Levi. We have resided there for almost a year and have loved the facility and our property manager, [redacted]!. The past year has been extremely difficult. Levi was diagnosed last June with level 3 nonverbal autism. We’ve spent countless hours in therapy in hopes that someday he’ll be able to function in the world. He also began having seizures in September which has been really scary. He was officially diagnosed with epilepsy just a few weeks ago which allows us to start medication to manage his seizures. I think it’s also important to note that Levi looks completely normal. He’s a happy child who loves to climb, play, and run. You wouldn’t know just by looking at him that he has neurological impairments.
On April 10th, we had an appointment with [redacted] at the main office to sign the appropriate paperwork for the next year. [redacted] was extremely kind and accommodating. While I was signing paperwork with [redacted], my son began to yell. He has a hard time processing new situations. I was trying to fill out the paperwork as fast as possible so we could leave. Another employee of yours appeared around the corner and stated that there were toys behind me that he could play with. I declined her offer and told her that I had to hold my son or he would run.
Not a minute later, another employee pokes her head around the corner and says, “Wow, I thought it was a little tiny baby yelling back here but I can see it’s not. Wow”! That last comment lit a fire within me. Whichever employee said that, went out of their way solely for the purpose to belittle my son and I. That comment was extremely rude and served no other purpose but to make us feel ashamed and embarrassed. It is so hard for us to leave the house for any reason. I constantly live in fear that I’m going to lose him, he’ll get hurt, or hurt someone else. Levi and I stay home ninety percent of the time and that is a reality for most autism families. The world doesn’t understand autism. We are seen us as a nuisance, a disturbance, and bad parents for not having control of our children. It is so vital that I do get Levi out into the world sometimes. I can’t keep him locked in a bubble at home constantly.
Yes, my son was yelling. Yes, he banged his head against the wall a few times while we were there. He self-harms when he’s too overwhelmed. I understand he was disruptive to the work environment but our appointment took less than twenty minutes. I thought the Housing Authority was in the business of helping struggling families not ridicule them. How dare one of your employees to pass judgment on a child and mother with zero idea of who they are?
I wish I had said something in the moment straight to her face. I froze. I felt extremely embarrassed. Once I got home, I broke down. This was our first time having to deal with someone blatantly being ignorant to our situation. I wish I could tell you the employees name. I didn’t even get a good look at her face.
I decided to write you this letter to bring autism awareness to the Housing Authority. My son is nonverbal and cannot speak for himself so I must be his voice. I cannot and will not sit idly by ignorance. While I wouldn’t change my son for the world, I will change the world for him.

Thank you for your time,
Nicole Harrell

I wrote and sent that letter over a year ago. Nothing ever came from it. While I’m sure I could kick and scream and cause a huge fuss, I’ve let it go and kept the lesson.

The lesson I learned was to speak up at the moment I’m met with ignorance. I will no longer carry any resentment. I have also learned to not concern myself with the opinions of others. If someone passes judgment on my son or our situation– I know they harbor judgment against themselves most of all.

I know I’m doing the best I can. I love my son. I love our life. That’s enough for me. It’s as simple as that.

nonverbal autism

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