“Ben cannot speak, is in diapers, doesn’t sleep, cannot sit still, hits himself every single day, puts his head through walls and windows, needs us to brush his teeth, bathe him.”
By L.A.
I recently saw an article on the new movie, Music, where the uninformed author wrote that the worst part of the entire movie is that it leads us to believe autism is a struggle.
This recent incident got me as it is one of the biggest issues I have with autism...
I then mentioned to someone that I had a son who is severely affected by autism and the response was, “Me too. It’s tough but I wouldn’t change a thing.”
Now, years ago I would have sheepishly agreed.
For some strange reason we parents have to celebrate this struggle our children go through because God forbid someone get the wrong idea and assume we hate our child.
This is such a strange phenomenon that has happened over the years with severe autism, thanks to the nightmare that is the spectrum.
I have never had to explain to anyone ever that I still love my husband while describing the struggles that come along with his type 1 diabetes.
It truly baffles me.
Yet, I am expected to celebrate my son’s biggest struggles. To hide the hell he goes through. If you don’t understand, then you don’t know this level of autism and that’s ok. I’m here to explain.
See, I’d give anything to help Ben while autism is doing the very opposite. Autism is a neurological disorder and it affects everyone differently. Ben is deeply affected.
Ben is a person. A beautiful person with an amazingly sweet and kind soul. A few “cool quirks” that autism might bring isn’t collateral for what he has to struggle through 24/7. That is key to understanding this end of the spectrum.
“No parent should ever feel bullied into suggesting their child’s suffering is a gift. Ever.”
Ben cannot speak, is in diapers, doesn’t sleep, cannot sit still, hits himself every single day, puts his head through walls and windows, needs us to brush his teeth, bathe him. You name it... he needs our assistance. You get my drift. Nothing is simple for him.
We can’t take him out in public any longer (especially now with the pandemic), he’s stronger than most grown men. He needs sedation for the simplest things and is on an unbelievably strong cocktail of meds to keep him from beating himself to death.
You will never ever find me parading Ben around in autism gear... EVER! That is not Ben. (Another BIG pet peeve of mine but to each their own).
Ben is Ben. Ben deserves so much and it bewilders me that I’m supposed to scream to you all that it’s a gift what he has to struggle through.
That’s not ok.
To me that is only meant to show you how wonderful I am as a mother in some sick twisted way. Look at me loving him regardless. (Yuck!)
Now, in my World... this is my dearest son who I’d do anything for. As far as I’m concerned no parent should have to explain that.
I don’t think he would choose his Mom to be around him 24/7 caring for him in every way at age 16. I think he’d like to be doing what most 16 year olds are doing. I would also bet he’d love to speak/communicate to tell us the simplest things we all take for granted, such as “my stomach hurts” or “I feel sad today”. Instead he puts his head through our walls to express his frustration and pain.
Shame on anyone that can’t see that is struggling with autism!!
My son deserves the same as everyone else and I will do everything to see that through.
He is my greatest gift and autism has no place in that sentence and I think he’d be angry at me if I attempted to portray it any other way.
Autism is a spectrum... it is not the same for everyone. That is key. The different perspective deserves to be heard and absolutely respected!!
I got you Ben. I see what you do daily and I hear you. No words needed. I see your struggle and I know how hard you fight.
No parent should ever feel bullied into suggesting their child’s suffering is a gift. Ever.
Nor should any stranger suggest autism isn’t a struggle for some. That is absolutely something only someone who is uneducated would suggest.
If you feel it’s a fun quirky gift... that’s your choice and I respect that but not this Momma. Not in the World we are living in. As far as I’m concerned this side deserves respect too.
Nor does me speaking out mean in anyway that I dislike my child. Quite the contrary.
L.A. is the pseudonym of a mother of son with severe autism. They live in Minnesota.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.