Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, November 08, 2012

Things I've Said

Lisa Quinones - Fontanez, parent of a child with Autism, has an article out about the things people say when your child receives a diagnosis. Reading it reminded me of a couple incidents I've had over the years. Umm...not necessarily related to the article.

Many years ago - because I'm THAT old - when my now adult sons were just preschoolers, there was a movie theater near us that played matinees of kid-friendly movies, and best of all it was only $1.50 per person. This was great when you didn't know if your toddler or preschooler could sit through an entire movie, and nobody cared if you're kid suddenly got to is feet, pointed at the screen and hollered "Mommy look at that big dinosaur!"

One afternoon I took 4 year old Noah and 3 year old Tyler to the theater. They did great except for the four potty trips.  It was a record cold Minnesota day in February, with wind chills in the -30* range, so when the movie was done we stopped in the lobby to dress the kids in their winter gear.

As we walked to the car, Tyler on my hip and Noah holding my hand, the frigid wind whipped at our faces. I heard a screaming child coming behind us. I turned around to see a woman dragging a boy around age 7 or 8 by the hand. He was wearing jeans, a tshirt and was barefoot.  In her other hand were his coat and shoes. The kid looked scared to death, and he had to be freezing!

I hollered, "What are you doing? Get a coat on that kid! Shame on you!"

Lets keep in mind I was a whole 23 years old. I felt like I knew a lot about parenting. After all, 3 year old Tyler was a really difficult kid!

The mother turned, her eyes shooting fire as she snarled, "Mind your own business! You have NO IDEA what you're talking about."

She had every right to be angry.

Fast forward 10, 12, 15 and 18 years and this scene has replayed in my mind over and over again as I've found myself in situations where people have judged what's happening between me and one of my kids. It's obvious to me now, after all these years and life experience of my own, that other mother in the parking lot was dealing with big things. Her son could have had autism or sensory processing disorder or who knows what! And there I was, a young mother, judging.

When Angela was born we lived in a small town in rural Minnesota. I was recovering from the c-section and the 75 mile trip to the hospital NICU was taking it's toll on me. I decided to take a day off from visiting and spend some time with my boys, which allowed me to see one of their baseball games. There was another mother there from a neighboring town who had a young child with Wolf Hirschhorn Syndrome.  I latched onto her. (poor lady!) I needed someone to help me get through this early phase of navigating special healthcare in our area and she seemed to know what she was talking about. Over the next couple of years we would chat periodically, but that ended one day when Angela was about 2 or 3. My new friend told me she was pregnant with another baby (their 5th or 6th if I remember correctly). Knowing that WHS was a genetic condition but assuming it was inherited I blurted out, "Is this a good thing?" I may have even said something as stupid as, "I hope this baby doesn't have it."

Clearly I had a long way to go. I could see parenting another child with Down syndrome, but in my naive  head I couldn't imagine parenting another child with a disability like WHS. I couldn't imagine a parent WANTING to do it again.

I'm pretty sure that's the last time my friend talked to me. I'm completely sure I deserved it.

These two stories stick in my mind because I know my words burned like a hot iron, and today I can feel the wound for them. If only I could go back and apologize. If only I could explain the young self I was at the time. If only I could take back the hurt I caused.

As I have parented one, two and now three kids with Down syndrome, I've heard lots of comments. I doubt I've heard them all though since I am continually being surprised. Today I choose to surround myself with people who "get it", because like the other mom from the baseball game, I don't really have time, nor do I want to deal with people who are clueless. I try to mentor new parents who seek out my support as long as I'm able, but sometimes they just need to experience things for themselves. Life has a way of teaching what we need to know. 

5 comments:

Jessica said...

This is such a great post. My son is blind and people say some crazy stuff to me. "Am I sure he can't see?" "OMG, that is awful!" "Can't he just get an eye transplant..." It's hard for me and I hate my son having to hear it.

But now I look back at things I have thought or judged before I had kids and ugh... I just had no idea.

The important thing is that we learned!

poor-android said...

I understand what you're saying, but it is still important that we look out for kids in public. The unfortunate reality is that there are some people who are not misunderstood, but simply cruel and abject.

This was my experience earlier this week:

When I arrived at the DMV, there was an incredibly belligerent young woman waiting with her young (probably 6-year-old) son. She was covered head-to-toe in tattoos and she wasn't engaging with him at all. Her only interaction was "Sit the f*ck down. I'm telling your dad and he is going to spank you." The kid really wasn't doing anything.
He was simply bored with nothing to do (no toys, no books; nothing). They were there before me, so by the time I left, they had been there for at least three hours, very possibly more. Shortly before
I left, the woman struck the boy very hard. Showing her the bruise, her only response was "Good. I'll hit you harder next time. And your dad is going to beat the f*ck out of you, too."

I couldn't take it anymore. Finally, I turned around and, as politely as I could, said, "You don't have to threaten him. He's not doing anything. He's simply bored. We've all been here for hours."
Being the remarkably classy lady that she was, she proceeded to say, "Mind your own f*cking business. Who the f*ck do you think you are? Huh? Who the f*ck? *some threats I don't recall*" This all took place in a room filled with young children. No one else said anything. The man sitting next to me simply smiled at me and shook his head. His 90-year-old mother was just trying to ignore it all.

There was another family that showed up after I had arrived. They were obviously quite poor. The mother was obese and covered in tattoos. She was there with her parents and her very young son (he was a toddler;
I would guess closer to one than two). The little boy had marked strabismus. His hair was matted, his clothes were filthy, and his heels were black with dirt. I think he may have had a cognitive disability. However, he was sweet as anything. He was quiet, just waddling around and checking things out. Occasionally, he would go up to his grandparents and take a cough drop. The grandmother kept saying "Those are medicine, not candy," but she didn't do anything to prevent him from taking them. He would have them in his mouth for a while, then offer it to his grandmother, who would then put them in her mouth.
(Yeah, it was gross.)

Like the belligerent mother, this mother didn't engage with her son at all, despite his age. Her only interaction was swatting him and telling him to "stay in the f*cking chair. I'm going to whoop your ass."
Again, this was a two-year-old, at best. He wasn't doing anything. He wasn't bothering anyone. And yet there was his mother, ignoring him except to hit him, threatening him, and allowing him to eat medicine like candy. He only said two words the entire time: "no" and "hungry."

These people deserve contempt.

"The only thing necessary for the triumph of evil is for good [people] to do nothing."

Leah S. said...

@android: yuck, what an awful time at the DMV. That is NOT people watching at it's finest, that's for sure. I hate being in situations like that.

My time at the movie theater all those years ago was not like that. I didn't have the life experience to recognize some things. Like the way boy in the parking lot was screaming was...well it was different...with a different pitch, and with a look on his face that was not characteristic of a child who's just made or being unruly. Now, looking back, I know the kid had some type of diagnosis but at the time I wasn't seeing that.

Melissa said...

Great post! I had four all with one special need or another and I could tell you some stories about stuff people have said to me! I always try to be mindful of my own experiences and not judge. Sometimes there are situations that just break your heart. A few days ago I was in a store and there was a woman with a small child about four. The little girl was adorable. African American with hair sticking straight up off of her head. The 'mother' was screaming at her repeatedly to sit down and shut up. I could hear her matter where I was in the store. I could here her high pitched voice telling that child to shut the F up etc etc. Finally I went for the manager. No way was I taking on that woman. Awful,awful, awful. So many of what psychologists called 'Don't Be' messages when my kids were little. I didn't think she would appreciate my viewpoint that by abusing her child she is in fact abusing her future GRANDCHILD.

Cindy said...

It's so hard sometimes to watch others parent their children. Or not parent, as is too often the case. Like all of you, there have been some careless things said to me about Beth and I'm sure I've said some hurtful things to others. Life is such a learning process.