Dumb Things People Say

I have a lot of thoughts today about autism and the really dumb things people say.  I need to explain myself though, and in order to do that I need to talk about my husband's mother.

It's been almost 7 years since Sandi, my mother in law passed away.  We miss her and think of her every single day.  I cry when I think of Sandi not being here with us on earth to give us love and encouragement for our boys.  She worked with special needs children at the elementary school that her children went to.  I just know that she would have been amazing with my boys and a very loving grandmother to them.

I met Sandi before I ever met my husband, Jason.  The first time I ever met her was on a Sunday in my church house.  You see, I had just come home from an 18 month mission for my church.  During that time, my parents moved to a smaller and more manageable home for their needs.  My parents attended a new church house (same church, but a different building) and when I got home from my mission I went to church with them.

I knew no one in this new church house.  No one.  So I was quite surprised when I first met Sandi.  We were sitting on a pew in the chapel when services were about to begin.  This woman on the other side of the chapel leans over and starts smiling and waving and mouthing something to me.  She was beautiful.  Like breathtakingly beautiful.  She had this stark black hair.  Her eyes were a piercing grayish green.  And she was dressed to the nines.  She had on all of this gorgeous chunky silver jewelry, a perfectly tied silk scarf on her neck, and perfectly manicured nails.  Like I said, she was gorgeous.

Sandi at our wedding reception

I smiled and waved back.  I whispered to my mom and asked her who this woman was.  Did I know her and just didn't remember?  My mom replied: "No, that's Sandi.  She is the sweetest and kindest woman.  She just loves returned missionaries.  She lives alone with her single son."  I hope I am setting up a positive image of this woman.

Fast forward one year- and I was marrying her single son, Jason.  Fast forward a year after we were married, and she was diagnosed with breast cancer.  She fought breast cancer for a long time.  She got to a point in her cancer treatments that she was unable to take care of herself.  At that time, Jason and I were the only ones in her family that did not have children.  We spent many of nights at her home getting her dinner, getting her medicine, and just spending time with her while she was feeling awful.

In the last few months of her life she was very sick.  We all knew that it was only a few weeks or days before she would pass away.  Lots of people in the neighborhood, in her local church ward, friends, and family members came to say goodbye.  Jason and I stayed in her room with her to be with her and visit with the other people that came to visit.

I remember this one incident so clearly.  A woman in her neighborhood came to say goodbye.  Jason and I both knew her fairly well.  Let's call her Mary.  There were other people there too.  Mary started talking to Sandi and told her how jealous she was of her.  She said that there was nothing more she would like to do than to lie in bed all day just like Sandi was.  Mary talked about how she was so busy and she just wished that she could have some down time and lie in bed too.

It was one of those moments where our mouths literally dropped and hung open.  Other people in the room were looking around like: 'Did she just say what I thought she really just said??'  But yes, Mary said it.  Luckily Sandi was so out of it and medicated at the time that she just smiled back at her, grabbed her hand, and thanked her for visiting.  Or maybe Sandi was just being the saint that she was.

Sandi's funeral

Jason and I still talk about that incident.  Did Mary really wish that she could have cancer so that she could lie in bed all day?  Probably not.  Hopefully not.  But people say things, especially in uncomfortable situations, that they don't really mean.  Maybe Mary was jealous of the attention that Sandi was getting.  They had been neighbors for years and then suddenly for the past 2 years everybody cared about Sandi and no one cared about Mary.  Or maybe it was just an uncomfortable situation and Mary didn't know what to say and then it just came out of her mouth.  Maybe.  Who knows.

Now what I just shared with you is a really extreme case that drives the point hard.  Jason and I call that 'the case of the cancer' whenever we talk about it.  I've had many 'Marys' in the short 2 years that we've been on the spectrum throw out 'the case of the cancer' to me.  People have said things to me, and continue to say things to me that I often think: 'Did they really just say that?'  Most of the time I brush it off.  I know that people just don't know autism and it's issues or maybe they don't know what to say.  I usually brush it off.  Sometimes though, it hurts.  Really really bad.

I won't share the ones that hurt.  I don't want to focus on those comments today.  Let me explain one comment that I get A LOT that I am good about brushing off.

My kids are both in an ABA based preschool.  ABA stands for Applied Behavior Analysis.  There are many treatments for autism, ABA being one of them.  ABA has been around since the 1960s, it is widely recognized and used, and has been endorsed by a number of state and federal agencies.  My kids go to preschool everyday and are gone for a few hours each day.  Both of my boys started this ABA preschool at the age of 2 and a half.  It is good for them to be in school, but they miss out on being little kids at home.  They are away from me, and that absolutely breaks my heart.  It actually kills me.  But, I know that early intervention is important and I know that this is the best thing for them right now in order to obtain the skills and behaviors they need to function in this world.

Ez and Ash at school.  Ezra wears sunglasses outside because he sensitive to light.

People say to me all of the time how jealous they are of me.  How easy my life must be.  How they would love to trade places with me.  I've even gotten a: 'how do I get my kid to have autism so I can send them off to school also?' How I must sit at home all day and just watch TV and Netflix.  I also get a lot of: 'wow, what do you do with all of that time to yourself?'  And: 'when are you going to go back to work, don't you get bored with all of that free time?'

People say dumb things and they really don't mean it.  I really doubt these people would trade their neurotypical child for a child with autism just so they could have an extra 3 hours alone each day.  They wouldn't really trade their child in, but they are probably uncomfortable with the situation and they don't know what else to say.  Or maybe they realize how hard my life is so they are trying to make me feel better by telling me how awesome it is to have 3 hours alone.  Whatever the reason, it's a dumb thing to say and sometimes I wish people would think a little bit before they speak.