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.