“I know how sensitive you are about these things”

Ouch. It was a comment made in an attempt to be sensitive to my feelings, but it felt like a punch to the gut.

“these things” that she was referring to happened to be people leaving out, discriminating against, bullying, or otherwise hurting A-Man.

I get a bit sensitive when Mr. C is invited to a play date for the fourth time in a row without A-Man.

I get a bit sensitive when people imply that I should avoid having more children with special needs.

I get a bit sensitive when someone asks me why my son doesn’t play like a “normal” kid.

I get a bit sensitive when people criticize me for feeding my son foods he will eat instead of forcing food that he can’t tolerate.

Yeah, I guess she was right.

I Am Sensitive For My Autistic Son

A-Man Is Routinely Left Out Because People Won’t Make An Effort

I’m not ignorant. I know that it is more challenging to take a child with autism to the park than to take a child without any disabilities. I know that when family and friends want to take Mr. C for a play date they just need to buckle him in the car and let him play, while taking A-Man requires pull-ups, pre-planned snacks, and handling potential melt downs.

I know that Mr. C can easily listen when someone tells him to stop playing with something while A-Man can easily become fixated on something (and it’s usually something he shouldn’t play with, like cords and wires). But I also know that it doesn’t take that much effort to make something work for A-Man.

Pack some extra baggies of goldfish crackers, give him some time to adjust to new surroundings, and he will have just as much fun as Mr. C almost every time. There are some events that A-Man truly can’t handle, like spending the night somewhere new or going to Chuck E Cheese, but those are the exception and not the rule.

So yes, when A-Man is left out of an outing or event that he would really enjoy simply because it might take a bit more effort, I’m sensitive about it.

People Say Terrible Things About Disabilities Without Realizing

I know that in this day and age, it’s nearly impossible to say anything without offending someone. That couldn’t be more true in the disability world. If I say that A-Man is autistic I offend roughly half of the population, and if I say that he is a boy who has autism I offend the other half. I talked more about the person-first vs. identity language debate here.

I tend to give people the benefit of the doubt, especially if they don’t have any reason to understand the ins and outs of discussing disabled children. I do realize that most people are not intentionally being cruel, but sometimes it gets really old.

When someone asks what is wrong with A-Man or says something like “my child would never still be in pull-ups at four” I get a tad sensitive. Right now A-Man doesn’t understand cruelty, which I am incredibly thankful for, but one day he will. I will not allow people to insult him no matter how sensitive that may make me.

Being An Autism Mama Is Hard

This is probably the biggest reason that I’m sensitive. Between the pull-ups, melt downs, food sensitivities, therapies, specialists, and 947 other things that we deal with every day, we honestly don’t have the time or energy to deal with people being terrible to/about us or our kids.

We are tired and overwhelmed. We get overly excited over small victories, like a trip to the grocery store with only one melt down, and we can get easily upset by difficult set backs, like adding yet another therapy to our already busy schedule.

When you heavily favor our kids without special needs over those with or you make nasty comments about our kids or our parenting, it adds yet another burden to our already heavy load. When you do these things to a special needs mama, you may just be adding the stone that will break her back.

So friends, we know that you aren’t trying to be cruel, and please know that we are not trying to be overly sensitive. Most of the time we are just sensitive for our disabled kids because we have to be. The world certainly isn’t being sensitive to them and their needs, so it hopefully isn’t too much to ask for our friends and family to be a bit sensitive to our needs.

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About Kaylene

Kaylene George is an autistic self-advocate, author, and mother of five, including one autistic child. She realized her own autism as an adult shortly after her son received his initial diagnosis. Suddenly the parts of her that seemed so “weird” to society had an answer. Since then, Kaylene has passionately shared about her experiences with autism from both sides of the great divide between parents and autistic self-advocates on AutisticMama.com.