Wednesday, August 14, 2013

People with Down syndrome are whole

"I just love people with Down syndrome. They are always so happy!"


I can't tell you how many times I've heard that stereotype.


And it isn't a bad stereotype ... I mean, I'm not terribly upset that people have that misconception about my daughter. If there was a stereotype that went something like, "People with Down syndrome are always so rude", I would probably be a little more distressed.

Having said that...I guess the reason the always happy stereotype sometimes rattles me, is that I want people to understand that Lily is a person. She's not a grinning zombie, oblivious to the world around her, happily stumbling through life like Mr. Magoo... she's a whole person.

Meaning she has a whole range of emotions, from irritated to elated, from joyful to ticked, and on any given day we will see the entire gamut of emotions displayed. She has a personality. She has preferences. She loves cheerios and watermelon and snow peas and hamburgers and salad. She hates cucumbers and meat loaf and bananas and any kind of cereal other than plain cheerios. (Try to sneak a bowl of honey nut cheerios in, and she will spit them out and yell "NO WANT IT!". With a vengeance.)

And don't ever, ever come between this girl and her chocolate cake...





She is a person.


She gets grumpy if she hasn't had a nap, she gets mad if her sibling takes her toy away, she cries when her older sister leaves for work, she gets shy around people she doesn't really know, she is whiny when she is hungry, and sometimes she throws a fit when it's time to brush her teeth.


Okay, I lied. She always throws a fit when it's time to brush her teeth.



And she hates it when you tell her not to run in the street.....





Along with all of those other emotions, she does exhibit a wide range of happier feelings as well. And  yes, I would have to admit - I see something in my child with Down syndrome that is perhaps lacking in my other ten kids.


She forgives easily - she never holds a grudge. We can coax her out of a bad mood quite easily by offering to read her a story or having a tickle session or....gasp...giving her a cookie. She gets over things more quickly than my other children, she goes with the flow more readily, and she rarely lashes out in anger physically. There seems to be something in her personality that loves unconditionally...she's only three, but so far she seems to move from a conflict with another child to affection quite smoothly. In fact, she is the most affectionate of all my children, lavishing hugs and kisses on each of us throughout the day. She smiles more than the rest of us, laughs more, enjoys snuggling more than any of my children.





So what am I trying to say?

I think that there is some truth to that stereotype about people with Down syndrome, as far as the capacity to love more, to smile more, and yes...to be happier.

But what I hope people see beyond that, is that people with Down syndrome are people just like you and me.

My daughter has a mind of her own, she has the capacity to feel a whole range of emotions, and she is very much her own person... a whole person.

And I want her to be treated that way.

Because we treat people the way we view them, don't we ?

I want people to be respectful of Lily as she grows older, to acknowledge that she has desires of her own and choices that are her own to make, and to speak to her as a whole person. I hope that people ask her questions about how she's doing, ask her what her interests are, show her that they really care about her as a human being, and not a syndrome.

I pray that others view my daughter as just who she is - a complex, unique individual, who perhaps has a greater capacity to experience happiness, but is indeed...






a whole person.

17 comments:

Faith Kopp said...

No need to defend my Lily Anne. She is who she is and that is: a perfect grandchild. :} Cannot wait to hold her, and all my other grandchildren and GDIL's, and my GGS. Oh, and my daughter and SIL.

Megan R. said...

She sure is dang cute!

katrynka said...

Very articulate, I love this post.

Amy said...

I love that God gave Lily a mother who sees her for who she is & brings that awareness to others. You are an inspiration to me friend.

cindie nunez said...

I agree with your first commenter ;-)

kate kopp said...

Thank you Patti for your honesty!! I just love Lily's innocence and am happy she advocates for her self. I have never seen anything but love from any kid I've ever known with down syndrome....but love is not perfectly behaved...and I thank God for that! So glad she lets the world know when she is not happy!! I just read a disturbing article about the science of removing the impacts of the extra chromosome though - even in older DS kids....and even as a mom without a DS kid - that scared me so much!! Maybe they can fix some of the "stuff", but really, there is so much of the specialness that is worth so much to the world!! I would hate to see that go. Hugs to every mom and family of a DS kid - you are all special. Thank you for sharing your special person with the world....we all need that.

Twilson9608 said...

I find it so strange that is the stereotype that "our" children have been labeled with. And while it could be worse, it does make them seem less human. Programmed even or stuck on "auto pilot". While my daughter(who is currently 3-1/2 yrs old)is very easy going, she is also fully capable of every emotion that any other person with and with out Down syndrome is capable of expression and believe me, she shows all of her emotions at one time or another. Yes, she is a whole person. Perfectly put. ;)

MamaV said...

I like the chocolate cake face. I would be afraid to touch her cake!

It helps to see anyone as a whole person when you know them really well. Thanks for sharing Lily with us and helping us to know (and love) her!

Sonya said...

I had two separate incidents over the last two days where, in shock when I told them my daughter had Ds--she's almost 15 months now--they told me something to the effect of "they" are always so happy. Rubs me the wrong way too. Of course the other person listening into my conversation told another shocked colleague that it was genetic--meaning she inherited it from her parents. I almost jumped out of my usually polite skin to correct her!
Does you ever become less sensitive to it?

cara said...

Could not have said this better!!!! Thank you!!

I would not mess with Lily and her chocolate cake for sure!!!!

LOVE her hair in braids! xoxo

TT Lynn said...

Oh this is funny I just wrote about this very topic on my blog today, there must be something in the air! Your sweet Lily is gorgeous. Love this post, love the pictures. I love everything about it!

Race Bannon said...

Another misconception is that people from New Jersey are all rude, and think that the world starts and ends in New Jersey. But I met a group of people who seemed happy to live life, they didn't even have to mention the shore, or what exit on the Parkway they lived off of. Wait, never mind...I was in Pennsylvania. Well, anyway, your daughter sounds great, just keep her away from the Shore...


But is it true that they are all superb line dancers? I think that one holds true...

MotherT said...

Patti, when I was working as a bank teller, one of my customers was a 50+ yr old man with DS. He was wonderful to serve because he was usually so happy and easy-going, but one day he came in with his caregiver and had obviously NOT had a good day! He came straight to my window, by-passing the line, and slapped his check down. While I was cashing his check he kept muttering "Jack, do this! Jack, do that! Jack, come here! Jack don't wanna do none of it! I want to sit on MY couch and eat MY food and color in MY book! That's what Jack wants!" He was having an absolute bad day! After I got off work, I ran into Jack and his caregiver at the grocery store. He was still in a snit. I gave him a hug in the produce aisle and the I went straight to the toy section, picked up a coloring book and a new box of crayons, paid for them and waited until Jack had checked out. I told him to go home, eat his supper and then color some pretty pages. He gave me the biggest hug, and immediately turned to his caregiver and said, "This is what I talking about!" Just the act of simply acknowledging his desire to color, turned his mood around.

I know not all DS people are happy all the time, but just like any other person, it usually doesn't take something big to turn the mood around. I love the way you advocate for our chromosomally enhanced population! And I dearly love following Lily's antics here and on IG!

Elissa said...

So true Patti. Great way of explaining this.

eliz said...

I hate this misconception because it allows others to dismiss my kids and M.A. as being "happy". At outings little attention or no attention is given to their needs "because they are SO happy". Example, we were at a homeschool get together and they ran out of prizes, the "special" people did not rush up and greedily grab them before everyone else. So M.A. and our kids were told- "It's o.k., they are having cake over there." Well yes they all cheered up for cake, but goodness they had every right to pout over missing out. They had every right to and they would have if cake wasn't there. I almost felt as though they felt it was all o.k. because they could be re-directed so easily.......sigh..........
Then when I tell anyone about my 18 year old son's difficult transition through adolescence, others will say "he's so happy!" And he is happy sometimes, but he struggles too. Oh boy- thanks for letting me go on here. I remember when M.A. needed an antidepressant and everyone was shocked that people with DS got depressed! OY!

MamaV said...

I love this! Poor Jack :-)
I deeply empathize.

lovemy3 said...

I hate the stereotype, but like you agree. There is something in Hailey that the boys are missing. She has their full range of emotions, but her negative ones (upset, sad, jealousy, anger, etc) don't seem to last as long as the boys do. I sometimes wonder, too...maybe people are jealous of that fact. That people with Ds do appear to be happier with their lives, happier with everything. Maybe they wished they possessed more of that.