Saturday, May 9, 2009

"High Functioning" and why I don't like it

I've been meaning to write about this, so after reading Megan's post I thought now would be a good time.

Following Goldie's birth, we heard a lot of comments like, "maybe she just has a mild case of DS" or "maybe it won't be too bad" or "she doesn't have all the physical feature so it must not be as serious". I don't like hearing these things, but I usually assume that people mean well and I explain that DS doesn't come in varrying degrees. Every child has their own strengths and abilities.

When Goldie was around 6 or 7 months, I was really worried. Laying awake at night,crying worried. I really thought she was blind and hearing impaired. She couldn't see further than 3 feet away and she wasn't turning toward sounds. I held her all the time because I didn't want her to think she was alone. Having her pictures taken was gut wrenching because she had no idea where the person with the camera was. No amount of singing, clapping or toy waving registered any response. Her eyes would search all over the room for...something.

It was during this time that this person stopped to drop off some things she had bought for the girls. Now, I don't want to air our family's dirty laundry in public, but let me say that this an immediate family member who sees Goldie at least twice a week. She aked how Goldie's therapies were going and then she said "Well, I'm sure she'll be fine. She's high functioning. You can just tell she's high functioning."

What I heard was "I hope she's high functioning because her life will have more value and I don't know if I can love her if she's not."

I didn't know what to say, so I nodded like a bobble head while opening the door for her.

What I really wanted to say was "Are you effing kidding me? My kid can't even see you from four feet away. If you spent more than 5 minutes with her you would know all the things she can't do. I don't care if she's high functioning. I love her anyway. I have a love for her that others will never know." I know part of that sounds really negative, but I was very aware that she wasn't doing most of the things her sisters did at the same age. As Goldie's mom I've learned to walk a fine line between reality and high expecatations while always trying to stay positive and optomistic for her future.

While working on our presentation last month, my friend Sarah, sent me a link to Disability is Natural with information on people first language. Then this week she forwarded a copy of this article. I enjoyed reading this because she brings up many thoughts and feelings I've had over the last 2 years.

I'm overjoyed by the progress Goldie has made. We've been told she is still legally blind, but I'm amazed everyday by what she CAN see now! She hears everything. We even have to spell in front of her. (Don't say popcorn unless you plan on making it!) But, I still see people trying to size her up or compare her abilities to others. I've also seen the pity when they ask if she is doing something and I say no. I know they feel more sorry for Goldie or me than we will ever feel for ourselves.


Linda said...

Oh my, I'm feeling the urge to write a "high functioning" post myself. I loved the end of your "Holland" post- I'd forgotten about it but I got tears in my eyes as I just read it again. You like to think that Goldie looked down that Thanksgiving and chose you to be her mama. How blessed she is to have you, and you are blessed to have her. Most people will probably never understand the true meaning of that. But you do! Happy Mothers Day, mama!


Michelle said...

I love my Ruby just the way she is too - and this post was awesome!!!

Courtney said...

I loved this post. I remember when Lucy was little and people would comment on not being able to "see the Downs". God, I wanted to punch people, even the ones who I knew meant no harm because I wondered the same. Would you still love her if "the Downs" was staring you blatantly in the face?

Little do the folks in Italy know just how lucky and blessed we are to be in Holland. If they did, they'd never feel the need to rationalize how "it's all going to be ok".

Beverly said...

Love it! I love that picture of Goldie too! Oh, we must all hear those same things when our kids were babies. I think most people mean well but still it bothers us.

Loren Stow said...

It is so difficult to take people's comments sometimes... And there is a push-pull between keeping up with milestones and celebrating the good job that our kiddos are doing.
Your post has made me think - and thats a good thing!
Thank you and happy mothers day!

Jennifer said...

Thank you for writing this. I can't stand when people ask me how Aidan is doing because I don't want to have to compare him to anyone. We love him just the way he is. Not to mention, I firmly feel that how my kid is doing at the age of 3 doesn't necessarily predict the future. Plus, people make me feel like I'm not doing enough if he isn't meeting milestones. I don't want to feel like Aidan is a "project" I'm working on. He is my son. Great post.

Karen said...

Awesome post! Thank you. I truly hope that Goldie has been accepted by every family member by now, for exactly who she is.

Becca said...

Well put! Goldie's got one awesome mom! I am so uncomfortable by the "high functioning" terminology. I don't know what it's supposed to mean, especially when it comes from someone who doesn't have a clue about Ds. I always assume they're trying to placate me, when I really don't care what they think, and certainly don't need placating. As our geneticist always tells new parents of children w/Ds when they ask her when they will know what their child will be capable of, "At the end of their lives." You just never know.

Mary said...

I've really enjoyed reading through your posts. This one was right on. If I had a dollar for every time I've heard this, I'd be a rich woman.