When You Feel Like You Don’t Belong in Society Anymore
There have been many “hardest” autism moments, and the truth is, when I think it can’t get harder, there is always a next time that makes it harder. I hope that makes sense.
There have been many “best moments” too, but let’s talk about the hard times, because we currently just had a horrible moment.
The first hardest autism moment came before I even knew he had autism. We had just dropped Dad off for a year long deployment at the airport.
I wouldn’t have even attempted the store, but Noah seemed to be doing okay and we needed something for dinner. Just about five minutes into the store, he started having an extreme meltdown.
I realized I just needed to grab something quick to get us through that night.
Noah was screaming for his Dad when I felt a tap on my shoulder.
I am trying to just make it through quickly and the tap could have been a knife to my chest after what the lady said to me.
I turned, and smiled, because that’s what I assumed would help the situation. And just then, she rolled her eyes, glared at my four year old, and said…
“Your son belongs in a mental institution with padded walls. He does not belong in society, he doesn’t belong here at this moment in time, he belongs somewhere where no one is bothered by his presence. What the hell do you do as a mom, to have a kid act like something out of a freak show?”
I immediately turned, burst into tears, left my cart, and went to the McDonald’s drive thru for the night.
Those words still linger in my soul. Usually at least on a weekly basis.
And the next hardest moment happened just this past weekend.
We went to Disneyland…we did everything the books said to prepare him.
We made a social story.
We explained to him what was going to happen.
We showed him videos of the rides.
He seemed happy, he seemed ready. Then we got there.
And the screaming started. Then the eloping. Then the major behaviors.
My older son and my husband went to do a ride, and as I was trying to distract my son, he grabbed a kid with his arm (kind of in a chokehold).
I immediately grabbed him and took his arm from around the boy.
The dad looked at me irritated and pissed.
I get it. If my son had just been grabbed I wouldn’t be the happiest either.
So I tried to explain to him on the fly what was happening, and he said, “if your son can’t behave out in public, he doesn’t need to be out in public.”
I immediately flashed back to the lady yelling at me in Walmart.
It has been seven years since that incident and he still cannot be accepted in public.
This is why we stay home. This is why we don’t go out.
And he did great at Disney in February. Wonderful. The same when he first went to a Padres game.
And then something happened to upset him. And that is the only memory he can remember. He won’t stop having anxiety over that one bad moment.
As we were leaving in February, they started the fireworks when we were walking to our hotel. He hates fireworks…we thought we had gotten out in plenty of time. But we didn’t. And that entire Disney trip was ruined.
The next day he barely made it through the gate before tears and meltdowns ensued. Each time since then has been the same.
Each time we try. Each time we hope for a better outcome, but it just seems to be getting worse with age.
At what point do we just give up and never go out into public again?
We have to wait until night time to go to the park, because with his behaviors, it is hard to keep him under control around younger kids than him. It is hard to keep him cooped up in the house, but he is only getting bigger, and I am not getting any bigger.
Another hard moment, is trying out medicine. I thought I’d never put my son on medicine.
I am literally in tears writing this because I finally came to the decision that maybe medicine will help.
We are now on medicine #5 and it only makes the behaviors worse. My house was clean, and within two minutes, it looks like a tornado came through.
There have been many great moments, and I promise you I tell everyone about those, but these are some of the hardest moments.
Written by, Tonia Brown.
Interested in guest posting? LEARN MORE
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter. Interested in guest posting on Finding Cooper’s Voice? LEARN MORE
Hi Tonia,
I related to your story big time. I have a 9 year old autistic son. I, too, have often thought… what do people want me to do? Stay home with my autistic son in a strait jacket? He has typical siblings. We try Disney once or twice or a year. It is good most of the time! Right when it opens + first three hours is not as crowded and we are all fresh. But omg this January we had a spectacular meltdown with peeing pants, arms and legs swinging, and more. In Tomorrowland which is always the most crowded and unescapable. I feel for you!! Anyhow, your letter is so sweet. I have been in your shoes- my son was so aggressive ages 3-8, he would lunge and pull hair at other children, or poke eyes. I respect my son’s limitations and avoid setting him up for failure, but I still have to try public and outings. Sometimes it is great. Sometimes we crawl home with our tails between our legs. People should understand we have a right to try. I cannot promise it will get better, just different. My son is now more of a self-injury guy. Sigh. But you will reach a point where if people are not kind or not willing to simply ignore you, your attitude will and should be “F___ ’em”- they are not capable of understanding what you and your son are going through. Please think of me understanding where you’re at when you feel like no one understands!
I am sorry people are so cruel to you and your son when you are in public. Nothing can take away the hurt they inflict. Thank you for sharing your story. I am just learning about autism and know I am much more understanding of what your family might go through. Sharing and educating are part of the solution.