Being the parent of a child with Down syndrome is something I chose to do. It wasn’t a decision I made lightly and I did an insane amount of research, reading and preparing before I truly committed to adopting a special needs child. I knew there would be developmental challenges, medical issues and educational alterations.
I KNEW this. I accepted this. I was prepared.
Or was I?
It’s been over five years since I became the mother of a child with Down syndrome. It’s been five years since I entered the world of community and advocacy. As with most things in life, I entered it with both feet running. I’ve done the play dates, the doctors appointments, the informational sessions and workshops, the fundraising and everything else that you can imagine. Hell, I even started a Down syndrome awareness project that took over my life for the first year of its existence.
I listened to all the hubbub of putting the child first. After all, she is a child with Down syndrome; not a Down syndrome child. And yet, no one focuses on my CHILD. People don’t treat her with kid-gloves because she’s a typical six year old child. They don’t ask me questions about her or pick her out of a crowd because she’s “just” a kid.
I think I’m a bit worn out about it all. I expected to have to work harder and parent differently because of my child’s special needs, but I don’t think I expected society to lose my child in the process. The fact of the matter is, they will never see her as a person first. Her accomplishments will be more important and worthy of celebration because of her “disability”. Everything she does in life will be heavily praised and exceptional…not because she’s a PERSON, but because she’s a person with Down syndrome.
And yet, who’s to say how much further she would go in life if she didn’t know she was different? Who’s to say how much more she would be capable of accomplishing if it was expected of her instead of pushing her to just to see if she can do it? Would people be more apt to push her to succeed if they were blind to her flat nose and almond shaped eyes? Would society treat her more casually instead of with an unnecessary amount of sensitivity if she only had forty-six chromosomes?
I wonder if my child would have the issues she has if she was treated like any other child. Would she throw the fits she throws if no one had ever let it slide because, well, she’s special you know. I wonder if she would take advantage of certain situations because she knows she can get more of what she wants by dumbing herself down and manipulating a situation.
My child is not stupid. Over a year ago, she wanted to unlatch the eye-hook at the top of our kitchen door. She couldn’t reach it, so she brought over her step stool. When she realized she STILL couldn’t reach it, she got her ruler out of her art drawer and used it to pop open the latch. She didn’t even bother to look back at me when she said, “Bye Mom! Love you.”
When Cheeks was on the way, we bought MeMa every imaginable doll accessory on the market so we could teach her not to touch the baby’s things. She isn’t the most gentle child in the world and we wanted to make sure she was aware that the baby’s items were off limits to her. Once the baby was here, she would ask to use something and we would say, “No. That’s Cheeks’. Go get the one we got for YOUR baby.” This seemed to work, at least for a bit.
Then, the other day, I found her pushing her doll in Cheeks’ swing. I told her to take her doll out of the swing and go get the one we got for HER baby. ”That’s Cheeks’.” I said.
My daughter looked and me, with an evil little grin, and said, “Yep. This is Cheeks.” and pointed to her doll.
She actually named her doll the same name as her sister, in an attempt to get away at using the various baby paraphernalia we have around the house. Not even I would have thought of that at her age.
My child was potty-trained when she was five years old. A year later, she stayed dry through the night. She’s writing her letters, matching up objects and holding her own in five year old kindergarten.
I’m not naive. I know she has deficits. I know she needs extra help in some areas. But when does she just get to be a kid and not a kid with Down syndrome? When do I just get to be a mom and not an advocacy pushing, fighting, special needs parent?
I’m tired of fighting. I’m tired of advocating.
I’m simply burned out.
“Children need love, especially when they do not deserve it.”
-Harold Hulbert
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