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.
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.
